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I am a 50 or so year old woman who at 43 was told I had cardiomyopathy (that is when your heart muscle is weakened due to an underlying cause they did not know). I was told when they admitted me to the hospital in heart failure that it was due to my thyroid, then they came later and said no that was not the reason. That was all I heard about a thyroid. I did not even know what a thyroid was at that time. That was in 1998. In about 2000 I began having symptoms of heat intolerence and shaky hands and getting really sick when ever I overheated a little. I made hospital trips where they told me I was in menapause, I was having anxiety attacks and everything else they could think of. Finally my sister took me to her doctor she worked for and he told me to have a test for thyroid and that was the begining for me of a pure hell. I have been on Methamazole for six to seven years now and the doctor is still trying to wean me off of these meds and I keep going hyperthyroid. So I will have two good months then he drops the dosage down and my hell begins. This time my tsh went so low 0.13 and I have been litterely in my house for seven weeks (and when I tried to drive I needed an ambulance), had a throat infection, an inner ear infection and every other infection you can think of. I have just come back from geting a CBC blood test. He finally figured out maybe my white blood count may be messed up. I had to pull off the highway a couple weeks ago and call an ambulance to come get me that I got so bad my whole body went into a shaking fit and I couldn't breath right, ready to throw up, I thought I was having a heart attack. Then they tell me it is anxiety after I told them I have graves disease and am hyperthyroid. I am going to go to Philadelphia University Of Pennsylvania Hospital for a second opinion but cannot get into there untill January. I have been through the ringer and back with this thyroid adn just cannot live a normal life no matter what I do. This has affected every part of my life. I went back to school at 47 and got my Associates Degree and I am now a Paralegal but after working in a law office for 2 years I had to quit because of my throid sending me to the hospital and affecting my vision to even work on a computer. This is a big disability worse then my heart problem I fear my heart will get worse because of this thyroid. I hope to talk to someone else who has same problem. I am currently debating RAI but I am afraid I will get thyroid storm or bulgy eyes afterwards. I will decide after my trip to Philly Hospital when I get a second opinion,. I have been reading horror stories about this RAI. Would like to hear from some people who have had it done. Thank you so much for listening. This is my first time on the forum.

Hi. Have you checked out this yahoo group: graves_support@yahoogroups? I've been off for close to a year but when I was last there it was the best support group I've ever been on for medical issues.
Here are some questions:
- are you aware of your T's? That you refer to just TSH after all these years worries me.
- What dose were you started at? Did you split it in half, or preferably thirds (yes, even for MMI)? When your dr. decreased your dose, was it a gradual or dramatic reduction? I put together an FAQ for hypER people that's on a bellaonline link. I'm not a dr. I can't say my answers are perfect but educated laypeople who've seen it, and one medical researcher, say it's pretty good. I think the questions are really comprehensive. I'm pretty sure I give a thumbnail sketch for how ATDs should best be administered.
- do you have copies of your labs? Really important. If and when you join the graves group that should be the first question you'll be asked.

Yeah, there are RAI horror stories. And I have to be honest. Some people do do ok after RAI. But no one should entertain having RAI unless
- they get a fair trial on ATDs
- they understand fully how thyroid replacement works and how their dr should monitor them. This education process takes time.
- they need to feel confident their dr. will give them optimal thyroid replacement treatment and monitoring. If a dr. doesn't know what s/he's doing with ATDs, you have to do some real investigation to be sure s/he knows what s/he's doing with thyroid replacement.

If I can help you further, please don't hesitate.
Take care,, Fayge (on methimazole for 14 months, off - that is, in remission, with an intact, functioning thyroid - for over 6 years)

I was diagnosed hypothyroid in summer of 2006. I had been very depressed and was sleeping up to 14 hours a day. I never felt "well" and I never had any energy even though I was a professional athlete from 2000-2005 and a small business owner! Imagine how frustrating that was! Something inside me kept telling me something was wrong, but it happened so gradually. Kept telling myself to "get over it and get to the gym". I would drag myself to the gym, but never got the normal burst of good feelings you get after a work- out. I just kept getting more and more tired! Friends and family were worried. I started to isolate myself. I didn't want to go out at all! I even had a hard time keeping in a simple conversation. My mind would just start to wander. It was terrible! My business was suffering because my ambition was being sucked away. I retired from athletics. No real motivation at all.
I didn't admit to anyone how I was really feeling because in my mind, I had some kind of mental "flaw"... was embarrasing... and I never like to hear myself complain!
Told myself it was probably normal aging and maybe I just didn't want to age, maybe I needed Prozac, etc... I didn't want to go to a psychologist because I didn't have anything to complain about! What would I say? "I'm depressed and tired because I'm depressed and tired?"
It wasn't normal! Friends my age were not having the problems I was having!
After really looking around and into the mirror, I knew I had to do something for myself... My hair was falling out, and my skin was starting to look terrible...... I thought maybe I was going through an early menopause. I went to my gyno. She sent me to the lab for estrogen tests and assured me it wasn't menopause. I went to two dermatologists and they said hair loss and skin problems were normal for someone my age (38) not to worry..(I knew they were not normal for me) One did a blood test for iron ... I was deficient so he suggested iron supplements... Fine, but no real help. I took the supplements and kept waiting to get better. It didn't happen!
Finally, I got myself to the endocrinologist for a complete blood test. Finally! The diagnosis! Hypothyroid!!! I started taking Synthroid and immediately felt better! I started having energy again! I feel I can accomplish things again! (Before, I wanted a nap after taking a shower.... Seriously!)
Functioning at an extremely high level now!
I even started a new business! I never thought I would have the energy to do that. Now, I wake up early, can work at both of my businesses , have the energy to go to the gym and actually enjoy my boyfriend and socializing. I am a totally different person. All I have to do is take a pill every morning. No big deal. I know there are women who want to say Synthroid didn't help them, but I can honestly say it improved my life 100%. Relief was within the first two weeks.
My hair has started growing back (took a year to even notice the regrowth) but it has changed color (lighter) and texture (kind of curly... weird for me). .. My endocrinologist said hair issues are normal with Synthroid and thyroid in general. My skin hasn't improved too much , but the trade off of energy is what matters. I would never want to go back to feeling like I did!
All women should get their thyroids checked regularly!

No woman should have to suffer in silence the way I did. Now, I wonder if my mother was hypothyroid because she had all the symptoms for YEARS. She passed away from breast cancer in 2003, so I can't tell her now. The lack of information out there when so many are suffering makes me angry.
I never knew how common it was. I never thought I would have a thyroid disorder and now I still cringe when I think of my "lost" years. I wish I had been educated! When I look back, I think of how much business I could have had if I had the energy I have now. How much productivity, fun, money, days were lost. It's sad, but I can only control the future and I am just very thankful that I found the right "cure" for my problem. I pray every day for women who haven't!
If your instinct tells you something is wrong, it probably is!
Hypothyroid is sneaky, but devastating! Get your thyroid checked!

I was diagnosed with Hasimotos but no doctor will treat me because my TSH tests are slightly elevated not high. Anyway, I have heavy periods, severe anemia, fatigue, hair loss, weight gain, etc. The Atkins diet helped greatly but any carbs keep me bloated and tired. Anhy suggestions on doctors in the Maryland area?

Hi Nancy. Do you have tests other than TSH? You really need to have a complete thyroid panel. That means the hormones T3 and T4 best tested as Free T3 and Free T4. (If you get hassled about that, check out Elaine Moore's articles on suite101. She explains why for women, the free rather than total number is important.

Like I said earlier in this thread, doctors should NEVER go by TSH alone. To compound the injurious practice of going by TSH alone many doctors will go by the old ranges for TSH, ignoring the fact that their own professional organ, the American Academy of Clinical Endocrinologists, has revised the numbers. (Check it out on www.aace.org .)

Some great and reliable books are Thyroid Power by the Shameses and Living Well with Hypothryoidism by Mary Shomon. (Mary has done great things for hypo people; unfortunately the hyper "community" has issues with her hyper book.)
Good luck!

P.S. Elaine Moore, who I mentioned previously, is the Mary Shomon for hyper people. She did have RAI and is now hypo, and regrets it thoroughly and has generously shared her experiences and knowledge.

My story started at age 39, in early 2003, when I crashed into severe symptoms of thyroid disease and had no idea what it was. Mine followed a severe period of stress, which according to many patient testimonials and research articles, can be a trigger for underlying thyroid disease to surface.
I visited a doctor who was filling in for my regular doctor and she diagnosed me with Generalized Anxiety Disorder and prescribed me an antidepressant, an anti-anxiety medication and a beta-blocker to control my adrenaline surges. My symptoms were; fatigue, post exertion malaise, brain fog, very dry skin, anxiety, depression, severe sweating, weight loss (rapid & temporary), joint aches and my hair was starting to break off in small amounts. The symptoms scared me out of my wits! I knew beyond a doubt there, was more than emotions going on, so I demanded a blood draw and asked for my thyroid hormones, glucose and blood counts to be tested. I had the blood drawn before I started the antidepressant that was prescribed. The Hospital lost my lab results for a month and didn't bother to tell me and when I called about them, they said everything looked great and not to worry about it.
My own doctor who was gone at the time I went to the fill-in doctor, returned and was just about to leave again, to go to a foreign country to become a missionary doctor. Just before he left, he was able to locate my lab results and wrote a review letter. His first sentence said: "Your lab tests indicate you are low on thyroid hormone". He also pointed out that I was borderline diabetic. The hospital staff who said my tests were normal made me realize you cannot take the word of someone other than a Doctor and you need to see all of your own lab results (get copies).
My TSH on the lab results, was elevated at "8.3" (range 0.4 to 4.5) and my T-3 Uptake (not a great test but more useful when added to other diagnostic tests) was several points below normal. I followed up with tests that revealed my hypo to be caused by Hashimoto's thyroiditis. My TG antibodies were at "537" (normal range <40) and my TPO antibodies were "120" (normal range <35). I also found out through other testing that my cortisol levels were low (adrenal fatigue) but an ACTH Stimulation test ruled out true (full blown) adrenal insufficiency.
I was started on Synthroid in 2003 and switched to Armour Thyroid in 2004. My doctor who switched me thought I might be one of the rare cases of "inadequate T-4 to T-3 conversion" but actually I was under dosed on Synthroid. Regardless, I do well on Armour and now take 2.5 grains (150mg). I also take vitamins and supplements that help the adrenal fatigue that can flare up when I'm physically overactive or experience high levels or prolonged stress.
I was also diagnosed with Non-alcoholic Fatty Liver Disease, caused by Metabolic Syndrome (insulin resistance type condition). I'm working on weight loss and improved diet, to avoid diabetes or worsening of the fatty liver. An important aspect of my treatment for everything is lifestyle changes (e.i healthy diet, exercise, stress control and healthy supplements).

Hi all.

I was diagnosed with Hashimoto's in December when my body went crazy after a brush with poison ivy... The allergist diagnosed it and now I can't get anyone to treat it.

My levels swing back and forth wildly (I know this because in December everything was on the Hypo end of normal, and last week every thing was on the Hyper end of normal... Plus I'm having weight swings -- gain 50, lose 20, gain 30, lose 50.) I've got all the classic symptoms -- hair loss, vision changes, fatigue, aches and pains, I can't think of anymore... Oh, brain fog?

I've been to 2 Endo's now... The first said my symptoms couldn't possibly be from the thyroid -- that they were all sleep apnea (had the sleep study, don't have the apnea) and the second actually did an ultrasound -- found 2 parathyroid enlargements -- but since there was nothing on the CT scan, has decided I'm really ok.

It can be so frustrating!!

Hope we all get our symptoms under control soon!!

Hi Cindy,

Thanks so much for sharing your story and was great to meet another fellow Editor!
You are so right about the frustration aspect because thyroid patients express it often, especially those who are told they cannot be having symptoms until their thyroid hormones are outside of the normal range. This goes against medical research that clearly points out the fact that the "thyroid antibodies" causing Hashimoto's (most common cause of hypothyroidism), can cause symptoms of hypothyroidism, apart from hormone levels.
It also sounds like from your story, that you are experiencing the wide swings in weight from phashing between borderline hypothyroid and hyperthyroid. This can be from flares of thyroiditis but can also be from a patient having "TSI" antibodies, along with those that typically cause autoimmune hypothyroidism (TPO & TG Antibodies). The TSI ones are what typically cause Grave's Disease but in Hashimoto's patients, can result in spells of "Hashitoxicosis" (phasing from hypo to temporary hyper).
I didn't look at the polls I have up right now, to see if you added your vote to them but I list "brain fog" as one of the troublesome symptoms we can experience. I'm also about to write an article specifically on that symptom-subject.
Here are a couple of links to ones I wrote in regard to thyroid antibodies contributing to symptoms:

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Hello, I am new here. My name is Stacie, I am 39, and I live in Orange County. My "fun" started a couple of years ago when I knew something in my body had gone haywire. I just felt way too tired for my age. Then the nausea and headaches & heat intolerance started. I also had major brain fog and mood swings and was put on an anti depressant for the first time in my life. I also saw a rheumatologist for horrible body aches that felt like bruises and was diagnosed w/Fibro. He gave me Lyrica, which I decided NOT to take as I truly felt the pain was due to my thyroid levels being so whacky. I was told repeatedly my thyroid was "normal". It wasn't until I became a medical detective that I realized I needed to have my thyroid antibodies tested! My ANA results came back high, as did my TPO. I was finally taken seriously. Then, the docs gave me a scare and started doing all the Lupus labs on me. One endo. MISdiagnosed me w/Lupus and APS!! I looked at my labs myself, and saw that they were NEGATIVE! The correct diagnosis was Hashimotos, and more recently, Graves disease. I also have PCOS (Polycystic Ovary Syndrome) or Insulin resistance, which puts me at risk for diabetes..... that, I am trying to avoid. I have been divorced for 11 years, and have a 13 year old, so I have been on this long journey alone and it's not been so fun! I am feeling better than I have in a long time. I have been taking PTU and Atenolol for Graves for about four weeks now, and my labs have shown a normal free T4 (it was elevated before) but my TSH is still supressed at 0.01.

Stacierae,

Wow, what a great testimonial that demonstrates the need for antibody testing!
Some of the first articles I began writing on thyroid subjects in 2005-2006, I addressed the "thyroid antibodies" connection to symptoms, apart from hormone levels. Unfortunately, many doctors don't believe symptoms can occur, despite there being many medical research articles that contradict this belief.
Many conclusion even on the PubMed (National Institutes of Health/NLM) and other reputable medical research sites state that thyroid antibodies (the TPO ones more often cited) can cause symptoms "pre" thyroid hormone imbalance.
Here are examples:

"Conclusion: The most frequent thyroid functional disorder found in fibromyalgia women was SCHT {sub-clinical hypothyroidism}, more than in healthy population. Presence of TPO antibodies was the most frequent related to this disfunction."
References: (1)Cooper D.S.(2001)Subclinical Hypothyroidism. N Engl J Med 45:260-264 (New England Journal of Medicine)

"Conclusion. Our results suggest an association between FM {fibromyalgia} and thyroid autoimmunity."
Ref: J Rheumatol 2004;31:2036-40 (Journal of Rheumatology)

Being tested for thyroid autoimmunity (antibodies) is so important in patients with thyroid type symptoms and fibromyalgia because the disease can be present and causing inflammation in the body, far in advance of hormones falling outside of normal values!

Hi Stacie. Did your Hashimoto's swing to Graves, or do you have both? I know there are people on a yahoogroups graves list I was on (graves_support@yahoogroups.com) who had both; I think the conventional wisdom is to treat the one with the dominant symptoms. It's great you're doing well on the PTU. Did your dr. reduce your dose? After the first few weeks, especially with such a positive reaction, most patients can have their doses reduced by as much as half., especially if you were started at a high dose, like 300. It is very common to have TSH suppression, even for as long as months into treatment, so TSH is the least important number in properly dosing Graves. Unfortunately too many endos seem not to know this and will keep patients on high doses for far too long just to bring the TSH down.
And did you have the TSI antibody test done? It's good to have a baseline early in treatment.
Take care,, Fayge (in remission for over 6 years after 14 months on methimazole)

Hi,

I am 45 and developed the rare form, hypoparathyroidism, at the age of 13. My father was at that time the specialist endocrinologist at his hospital and although he thought he recognised the symptoms and knew what they were he and mum both hoped it wasn't. I ended up collapsing in fits and had to be taken to hospital (not fun for a 13 year old to be in hospital over Christmas) for three weeks. I'll never forget waking up in that ambulance because I felt so sick, but my mother was there and comforted me. They started off by telling my parents I had kidney failure because they mixed up my notes with those of an elderly lady of the same name who had the condition! However they did realise in the end that they had the wrong set of medical notes and in the end after three weeks of blood tests my medication stabilised my condition and I was allowed home.

I've been on one-alpha and Sandocal ever since and have no physical problems at all in relation to the hypoparathyroidism. I guess from reading the stories above that I'm lucky.

Hi Gillian,

Thanks for adding your story.
I've corresponded with a number of thyroid patients who also experience problems with their parathyroid glands, the four pea sized glands that sit on the back-surface of the thyroid glands(name literally means along-side-of).
Symptoms of parathyroid disorders are very similar to that of thyroid disorders but can be differentiated through blood tests. Parathyroid problems cause calcium levels to fall outside of normal values, while thyroid problems affect TSH levels and thyroid hormone levels.
Some thyroid patients who get partial or total thyroidectomies (thyroid removal), will experience damage to one or more of their parathyroid glands and will need calcium supplementation, along with thyroid hormone therapy.
My mother in law had elevated calcium at one point from hyperparathyroidism and it caused build up of calcium around her thyroid gland which had to be surgically corrected. They went in and scraped out the calcium. It was the first I had ever heard of that problem but now she does have to be treated for hypothyroidism as well.
This will be inspiration for me to compose an article on the thyroid-parathyroid connection!

Hi Fayge, Yes I was a Hashi girl who decided to leap over to Graves! My endo. reduced my PTU yesterday to two pills instead of 4. My T4 went from 2.5 to 1.4 in a matter of weeks! Thank you for your input on TSH supression, very interesting stuff.
Take care!
Stacie

Hi Stacie. I assume your pills are 50 mg? And do you try to take it 3x a day at fairly even intervals, e.g. 25, 25, and 50? Last question: have you checked out graves_support@yahoogroups.com? take care, Fayge

F,

Yes 50 mg pills. At first, I took two in the A.M and two at night. My endo just told me to only take two, but he didn't give me any directions on when, how, etc. I figured one in the morning and the other at night...I am clueless? What do you think?

Fayge,

P.S. Have not been to the website you asked about

Stacie

PTU needs to be taken 3x a day; methimazole (brand name in the US: tapazole) is best taken 3x a day too, but is effective longer and many people have seen success taking it 2x a day.

I highly recommend you check out the graves support yahoogroup. Not sure how to get there and what it's like now. I've been off it a bit over a year, but it was an amazing source of info - from the homepage to the fairly active message board.

Most of an endo's bread and butter - I've heard as high as 90% - comes from treating diabetes type issues. We thyroid people are in the minority, and hypers are a minority within that minority. So support groups are really helpful.

Hi Jim, After reading your story, I realize that my sleeping problem(which I've posted about previously) is caused by the adreneline surges. Do you know what causes adrenaline surges, exactly? Does that have anything to do with your thyroid or is that more adrenal in nature?

I feel as if I am about to lose my mind all this?

THanks for listening.

Peggy

Hi Jim, What a great discussion. I have been treated in the past for depression and was starting to suspect that is what is going on currently for me, but reading through this discussion have reminded to make sure to eliminate thyroid issues before going on the anti-depression issues. I'm browsing through more posts and your main site for questions to ask the doctor next week. Thanks!

Marge,

As you know, there can of course be other causes for depression, including simply being the emotions without underlying disease but thyroid disorders are a major cause!
I commend you for taking a proactive stance in wanting to have thyroid issues considered as a possible cause. I would suggest however, that a doctor not test TSH only because though it is the most sensitive of thyroid function tests, it can miss certain types of thyroid disorders. I would ask that the doctor order TSH, Free T-4 and Free T-3, plus "thyroid antibodies" (the TPO and TG antibodies).
This suggestion comes from five years of corresponding with hundreds of patients. Some were tested for TSH only and found later on, by adding tests of the Free T-4 and Free T-3, that they had "Central Hypothyroidism" (normal or low TSH with low thyroid hormones) because their pituitary gland was failing to stimulate the thyroid.
Other patients attested to being found "normal" after having a thyroid panel ran but a later test of thyroid antibodies, showed them to be experiencing "thyroid autoimmunity" (disease process that eventually leads to hypothyroidism, also called "Hashimoto's thyroiditis). There are still doctors who swear thyroid symptoms cannot manifest unless TSH and/or thyroid hormone levels become abnormal but medical research articles and patient testimonials say otherwise!
In my opinion if thyroid is tested, it should be done thoroughly because non-thorough missses some cases of developing thyroid disease and it only takes an extra stroke-of-the-pen for a doctor to add these tests. Why some doctors stubbornly refuse to order more than the TSH test to diagnose thyroid, is a mystery because it's nothing out of his pocket and is afterall the patient's life & health we're talking about.
Certainly there's nothing wrong with antidepressants if an underlying medical condition is not being ignored. In my opinion, thyroid, glucose and a complete blood count, are all important tests when trying to diagnose or rule out causes of symptoms.
I wish you the best with it!

I'm bumping this topic up, for new post/reply opportunities.

Evening all - I'm 48, diagnosed in 1994 with a TSH of 12. I was working 8-4:30 m-f then a p/t job from 5-9 for months, couldn't understand why I was SO tired, couldn't concentrate, cold all the time, always felt there was a lump in my throat. Well after that TSH of 12, md put me on 150 mcg of Synthroid. Wow, after a bit the weight came off, I perked up, but still had symptoms. After the md moved me back and forth between 150 and 175 mcg I was sure he didn't know what he was doing so I requested an endocrinologist. I was extremely annoyed that even after seeing a small nodule on the U/S, he blew off my swallowing problems on "anxiety", I'm surprised you could feel it". I told my md's nurse I was angry and she suggested I ask to see this other endo that their patients had raved about. The endo had other bloodwork done, sent me to a different facility for the U/S and by that time it showed I had multiple larger nodules. Aspiration biopsy/bloodwork showed I had Hashi. Their plan was to put me on suppressive dose of Synthroid. Kept me on 175, bumped me up to 200mcg. I started having anxiety attacks in the p.m. after dinner, shakes, BP thru the roof, ER visits, etc. I was losing weight as I couldn't eat, couldn't sleep well. Hot flashes at night, during the day, dizzy spells. Sent for a Stress Test, nothing wrong with my heart - the nurse practitioner at the endocrinologist (NP's rotate thru there for training I guess) never connected the high dose with OVERDOSAGE. Duh. I went to a new md, who saw it was way too high, dropped me down to 150. After reading up more saw that depression and anxiety were part of the disease and part of peri/menopause, I requested Xanax so I had a chance of getting thru work and getting some sleep at night. No problem. It helped with the shakes, hot flashes, lack of sleep, but not happy with the md brushing off my concerns with "your TSH is normal, so its peri/menopause", live with it, etc. I switched to another md, who upon hearing my after dinner/evening problems sent me for an abdominal U/S - bingo - gallstone. Removed. No more evening problems. He also did bloodwork and suprisingly said my 150mcg was too high still and dropped me to 137mcg. So far no more anxiety attacks, thankfully. No more Xanax, and I can eat again. He insisted on Paxil, saying depression was common with Hashi, so that's worked out ok. Cold intolerance is back, low energy is back, sleeping too much is back. He tells me to exercise, but when you don't have any energy, how can you exercise? Seems like he's missing something with the Hashi treatment, different drug? Thanks for any info

Krys

While I'm not a Dr. but rather a Thyroid Patient Advocate, I feel I am fairly well studied and have corresponded with 100s of patients over the past five years. I've formed some strong opinions in regard to hypothyroid treatment & monitoring it.
I feel that newly treated hypothyroid patients need to be tested for TSH, Free T-4 and Free T-3, for at least the first couple of blood test repeats/follow-ups to monitor their thyroid hormone therapy. I say this because there are some patients whost TSH levels are not accurate in reflecting thier thyroid hormone levels. Some patients see their TSH suppress very low before their thyroid hormone levels from the replacement therapy, place their T-4 and T-3 at adequate levels for them (above mid-range and higher-normal). I'm an example of TSH that needs suppressed more than the average patient. My latest TSH blood restest result was at 0.001 which for the average patient, would be at seriously hyperthyroid level but this only puts my T-4 at mid-range and my T-3 at between mid-range and high-normal, where I need to be to see symptom relief.
On the other hand, some patients need a TSH that seems a little high for a treatment level but they experience toxicity (thyroid med induced hyperthyroidism) if their TSH goes below a 2.0.
It's difficult to know which patients may be in these uncommon situations, unless the free T-4 and T-3 are tested along with TSH. By testing these together for the first couple of follow ups, it can also detect another uncommon condition called "impaired conversion". This one means that a patient is not converting enough T-3 in the body, from a T-4 only hormone replacement medication. In these cases, TSH may be well suppressed from an adequate T-4 level but the even more active T-3 hormone is staying low. These are the types of patients who need a combination T-4 and T-3 medication or need a T-3 added to the T-4 they are already taking.
I'm not saying you fit into any of these categories but the possibility of these type problems are why I feel more thorough lab evaluation is needed to monitor new patients on thyroid hormone therapy. Once it is established that their TSH accurately reflects their T-4 and T-3 levels, their thyroid hormone therapy can afterward be monitored with TSH-only testing.
If the more thorough testing is done and levels are shown to all be adequate or even best-optimized and you still experience symptoms, other blood tests may need to be done, to rule out other causes. Tests for anemia (CBC) or pre-anemia states such as lowering iron and/or ferritin levels and tests of B-12 level, glucose (HB A1C), inflammation, other autoimmunity, adrenal hormones, sex hormones etc... may all need to be done in patients with significant unresolved symptoms.

BTW: Welcome to the forum, it is good to see you aboard!

I am a 24 year old female, and recently I had made some blood tests due feeling sick with fever for a whole week and tired for the last 5 years always feeling fatigue.
The results came wonderful according to my doctor but I am not 100% convinced especially on my thyroid result. The result came out TSH- 3.010 mIU/L and FreeT4- 19.80 pmol/l. Here in my country ranges are the old one till 5, and as I am reading I found out that I am on the high side. I am sure that my tiredness is coming from my thyroid it is not normal to feel always tired my age whilst my friends always having lot of energy and me need to do weekend sleeping cause if not feel exhausted.

mgal,

It's good to see you here!
I would like to post my reply to you, that I sent in response to your comment sent via the contact form because it might be helpful to some of the members here.

"You are smart and wise in doing enough search & research to know that a TSH of 3.0 and over, is not necessarily normal. This is especially true if you have thyroid autoimmunity going on, meaning the antibodies that cause autoimmune hypothyroidism, are active in attacking your thyroid. The tests you need in my opinion, are the "TPO" (anti-thyroidperoxidase) and "TG" (anti-thyroglobulin) antibodies. These are the ones that cause "Hasimoto's thyroiditis", the most common cause of hypothyroidism and research articles on PubMed (U.S. Gov./NIH) and by other medical groups state that thyroid autoimmunity can begin causing symptoms before thyroid hormones are out of range.
It's not always easy to get Dr.s to agree to tests suggested by the patient but I would be very firm about getting him to order these for you and if he refuses, find a Dr. who will order them.
Here's a quote from the NIH/NLM (U.S. Gov.) website and the link, that states that a TSH at 2.0 and above, is suspicious for developing hypothyroidism.

"Normal values are from 0.4 to 4.0 mIU/L for those with no symptoms of abnormal thyroid function. However, those without signs or symptoms of an underactive thyroid who have a TSH value over 2.0 mIU/L but normal T4 levels may develop hypothyroidism sometime in the future. This is called subclinical hypothyroidism (mildly underactive thyroid) or early-stage hypothyroidism. Anyone with a TSH value above this level should be followed very closely by a doctor."

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Dear Jim Lowrance,

First of all would like to thank you loads for your prompt reply and all the detailed information you gave me.

Definitely, without doubt I would try to make all my best to find a doctor to order me those test ,by doing tests I am not going to loose anything so that if I have any problem with my thyroid I would start taking treatment now, not when things would be more complicated.

I am really health conscious and at the same time very disappointed, due to the fact that here in my country labs are still using the old version range, which is not healthy.

regards,

Marica

Thanks a lot for inviting me to join the forum, for sure I am going to join :-)

thanks loads for the useful information well to give you some more information i am on contraceptive pill for the last 5 years due to suffering from severe acne,could that effect my tsh also?? and also i passed from lot of stress periods where from the last 5 years i lost about 7 kilos due not eating because of stress..first university than my job, etc but now thank god i am trying to take life as easy as possible cause i was suffering from acid in my stomach, the antibodies test are the tpo and tg?? i had also done the rickettsia antibodies test which came negative, could that effect my tsh

i`ll hope that i will find a doctor in my country which would order the tests for me..i had already went to 2 doctors and told me eveything is normal and not to worry..i have to worry only if my thyroid was over 5 :-) they r bit crazy hehe

well for your benefit and also in order maybe to give me more information
i am going to send you all my blood test results that i had done
white blood cell count 5.30 * 10^9/l
neutropholis 2.57 * 10^9/l
lymphocytes 2.08 * 10^9/l
monocytes 0.53 * 10^9/l
eosinophils 0.09 * 10^9/l
basopils 0.03 * 10^9/l
red cell count 3.80 * 10^9/l
haemoglobin 12.0 g/dl
haematocrit 36.7%
mean cell volume 95.6 fl
mean cell hb 31.3 pg
mean cell hb conc 32.7 g/dl
red cell distribution 11.5%
platelets 218 * 10^9/l
mean platelet volume 11.1 fl
glucose 4.91 mmol/l
bilirubin 7.0umol/l
alkaline 36u/l
ggt 12.5u/l
alt 13 u/l
urea 5.6 mmol/l
creatinine 77 umol/l
c-reactive protein (crp) <6 mg/l
epsteing barr virus igg positive
epsteing barr virus igm negative
rickettsia antibodies negative
tsh 3.01 miu/l
fee t4 19.80 pmol/l

Wondering how you all deal with the weight issues from thyroid disease. Had thyroid removed 03/06 and have had tooo many problems to list. The one I find most frusterating is weight gain as I am very careful about what I eat and work out all the time. Before thyroid removal it was so easy, now it seems no matter what I do nothing works.The heart doctor is very concerned about weight gain (35 lbs since surgery, endo says I'm eating to much and not getting enough exercise. Labs always within normal range. The endo does not want me on Cytomel bacause of history with heart disease. Wondering if there might be some natural supplement that would help. Any ideas considered and greatly appreciated. rtylutki@uncnepa.org

hello

today I had went to the doctor to show hin my blood result test of a tsh 3.01 and told me that everything is normal the fact that is within range, no worry. I told him that from research done on internet i found that a tsh over 3 might be a suspect of hypothroidism.
what should i do??


thanks loads for the useful information well to give you some more information i am on contraceptive pill for the last 5 years due to suffering from severe acne,could that effect my tsh also?? and also i passed from lot of stress periods where from the last 5 years i lost about 7 kilos due not eating because of stress..first university than my job, etc but now thank god i am trying to take life as easy as possible cause i was suffering from acid in my stomach, the antibodies test are the tpo and tg?? i had also done the rickettsia antibodies test which came negative, could that effect my tsh

i`ll hope that i will find a doctor in my country which would order the tests for me..i had already went to 2 doctors and told me eveything is normal and not to worry..i have to worry only if my thyroid was over 5 :-) they r bit crazy hehe

well for your benefit and also in order maybe to give me more information
i am going to send you all my blood test results that i had done
white blood cell count 5.30 * 10^9/l
neutropholis 2.57 * 10^9/l
lymphocytes 2.08 * 10^9/l
monocytes 0.53 * 10^9/l
eosinophils 0.09 * 10^9/l
basopils 0.03 * 10^9/l
red cell count 3.80 * 10^9/l
haemoglobin 12.0 g/dl
haematocrit 36.7%
mean cell volume 95.6 fl
mean cell hb 31.3 pg
mean cell hb conc 32.7 g/dl
red cell distribution 11.5%
platelets 218 * 10^9/l
mean platelet volume 11.1 fl
glucose 4.91 mmol/l
bilirubin 7.0umol/l
alkaline 36u/l
ggt 12.5u/l
alt 13 u/l
urea 5.6 mmol/l
creatinine 77 umol/l
c-reactive protein (crp) <6 mg/l
epsteing barr virus igg positive
epsteing barr virus igm negative
rickettsia antibodies negative
tsh 3.01 miu/l
fee t4 19.80 pmol/l

mgal,

First, I'm so sorry, I didn't see your newer posts above. I check this forum for new posts several times a week (most days) and did not see the "new post" notice on this thread!
I hate to ask but if you can skip a couple of spaces over from your results above and list the reference ranges for those, we can better comment on them. Actually, to save you time, just list the ranges beside those that were flagged abnormal.
Lab results are something that help us learn more here, so thanks for sharing those and letting us know which were flagged.

ruth tylutki,

It's great to see you come on board here at the forum!

The weight loss and avoiding weight gain, is a biggy for hypothyroid patients, even when best treatment for it is received. It is one of the most common complaints you hear from patients.

I wrote an article on the subject although I didn't really have any secrets or special diet plans to share in it. I'm posting the link to that one below but would also recommend you check out Mary Shommon's book about diet for thyroid patients, which I'm posting the link to below the article link.

My article:
BellaOnline ALERT: Raw URLs are not allowed in these forums for security reasons. Please use UBB code. If you don't know how to do UBB code just post here for help - we will help out!

Dear Jim,

I am giving you more information about my health history.


For your information, I am on contraceptive pill for the last 5 years due to suffering from severe acne,could that effect my tsh also?? and also i passed from lot of stress periods where from the last 5 years i lost about 7 kilos due not eating because of stress..first university than my job, etc but now thank god i am trying to take life as easy as possible cause i was suffering from acid in my stomach and my doctor prescribed me nexium.

Yesterday I went to visit another doctor and told me dont wry about my tsh level and that next I`ll do the blood test again.
What do you think??

For your benefit and also in order maybe to give me more information
i am going to send you all my blood test results that i had done
white blood cell count 5.30 * 10^9/l (3.5-11)
neutropholis 2.57 * 10^9/l (2.5-7.5)
lymphocytes 2.08 * 10^9/l (1.6-3.5)
monocytes 0.53 * 10^9/l (0.2-0.8)
eosinophils 0.09 * 10^9/l (0-0.4)
basopils 0.03 * 10^9/l (0-0.1)
red cell count 3.80 * 10^9/l (3.9-5.6)
haemoglobin 12.0 g/dl (11.5-16.5)
haematocrit 36.7% (36-48)
mean cell volume 95.6 fl
mean cell hb 31.3 pg
mean cell hb conc 32.7 g/dl
red cell distribution 11.5%
platelets 218 * 10^9/l (140-400)
mean platelet volume 11.1 fl
glucose 4.91 mmol/l (3.9-6)
bilirubin 7.0umol/l(1.72-17.1)
alkaline 36u/l(35-104)
ggt 12.5u/l(5-36)
alt 13 u/l(4-31)
urea 5.6 mmol/l(1.7-8.3)
creatinine 77 umol/l(59-104)
c-reactive protein (crp) <6 mg/l
epsteing barr virus igg positive
epsteing barr virus igm negative
rickettsia antibodies negative
tsh 3.01 miu/l(0.4-4)
fee t4 19.80 pmol/l(10.3-24.45)

mg

mgal,

Your levels all look pretty good from what I can see, although your neutrophils are near borderline low, so need kept an eye on and maybe retested every few months. These can go low with certain types of autoimmune diseases but not as common with treated autoimmune hypothyroidism. The systemic type autoimmunity more commonly causes "neutropenia", such as Lupus and Rheumatoid Arthritis. Another cause can be low B-12 and I see on your tests this wasn't included, so you might discuss with your doctor getting it tested. B-12 can be low in advance of causing pernicious anemia and a B-12 level test can rule out that you're heading that direction of confirm the need for B-12 supplementation.
Other than this, I again believe that TSH at 3.01 is a little high for a treatment level. Your Free T-4 is above mid range but would be good to know what the Free T-3 currently is which may indicate undertreatment or confirm that your dose is close to where it needs to be as your doctor is suggesting.
The contraceptive could affect thyroid levels to a degree ( I lack search on this area) but if you take it ongoing during treatment, your blood retests will reveal any need for dose changes for this or any other reason.
In my opinion that B-12 level would be important because thyroid patients are at increased risk for developing antibodies to the glyco-protein in the stomach (intrinsic fator) that absorbs B-12 from foods.

Thanks JIm for your reply.

Unbelievable, :-( here it is summer time and this is the second time during summer time I have sore throat with little fever :-( this year 2008. I think that is the fifth time to stay in bed feeling sick and taking the fifth box of antibiotics cause my doctor always prescribe me antibiotics last time was sick was in June before I did my blood tests the doctor gave me zinnat 500 mg 2 per day imagine i was feeling overdose now he gave klerimed. I am losing my routine work. Antibiotics are killing me and makes me feel more sick. Is it cause I have lack of vitamins the fact that I catch every single virus in the air? I am taking multivitamins, start them in April but also get sick.
By any chance, do you know a good doctor in the country of Malta??
I had the tests checked due to this cause of getting always sick and I have already visited 4 doctors especially regarding my tsh level told me not to worry everything is fine.

mgal

mgal,

I'm sorry I can't help in referring for Malta but possibly a member here would have better information on that, than I.
I've heard lots of thyroid patients complain that since having thyroid disease, they are more suceptable to viruses and colds and that these more often become bronchitis. This is true in my case since thyroid disease.
Antibiotics make me feel ill and very fatigued as well and I know fatigue is a possible side effect of some.
In my opinion, a good multivitamin is good and can help supplement any of them that are low and helps the body have more resistence to colds/viruses.
If B-12 specifically is low, it might require injections to get the level back up. Testing the B-12 in the blood is the way to find out if it is low and if oral or injections of B-12 are needed.

Can any members out there help mgal with info on thyroid Docs in Malta?

Well I'm not sure I have a Thyroid Story although I am becoming very concerned. After a very stressful past few years I have begun exhibiting many of the symptoms you indicate such as extreme fatigue, very dry skin, hair loss, depression and unfortunately weight gain. I guess I have had brain fog as well, I just thought it was old age. Do I need to see a specialist? My Primary Doc doesn't seem to be overly concerned just continues on with the anxiety meds.

Hi Jim,

Thanks loads for your useful information you give me as always :-)
This is my second day sick at home,tomorrow hopefully I will go back to work even though I still have a sore throat and not feeling 100%. But I cannot be able to take any more sick leave. Well to tell you the truth, it`s from the age of 13 years that happened to get always sick especially in summer time is the worse. strange eh. Anyway hopefully next Saturday I am going to the clinic where I did my blood test and hopefully finger crossed they would order the following blood tests, I think if I have the result of these it would be perfect to know exactly what the problem is.

TSH AND FREE T4 GOING TO DO THEM AGAIN IF IS IT POSSIBLE, AT THE CLINIC IS FREE OF CHARGE SO I AM NOT GOING TO LOOSE ANYTHING TO REQUEST THEM, THAN IF THEY TELL ME THERE IS NO NEED, MOST PROBABLY THAT THING ARE GOING TO TELL ME. hope not.

I am going to tell them to order me the following tests:
TSH, FREE T3, FREE T4, TPO ABS, TG ABS, AND REVERSE T3
AND ALSO B12, VITAMIN D ,FOLIC ACID AND FERRITIN.

Do you think that with these tests are enough, so finally a doctor would be able to tackle more the problem???

Pray for me please, that I would find a doctor that would order them for me.:-)

mgal

Deborah,

mgal lists the tests that are important in evaluation of thyroid function. Your Dr. may have tested you for TSH level and if it looked good, tested no further. There are thyroid problems however that aren't detected by TSH only testing, so for really good evaluation, those listed in mgal's post are the ones that help to rule out most possibilities or will detect them.
If your current Dr. won't seem to budge in evaluating your thyroid further, I would ask him for a referral to an Endocrinologist or thyroid specialist or even a really qualified MD who treats thyroid. Your symptoms could be thyroid and certainly sounds like a strong possibility but there are other hormonal problems, diabetes etc... that can cause similar ones. Thyroid is an important one to test along with getting a CBC - complete blood count and testing for diabetes. If the problem isn't detected, he would then move on to other possibilities.
Some people who don't have access to Dr.s who can order them testing, will use HealthCheckUSA, a company that sets up blood draws for Quest Diagnostics and requires no Dr. visit. I've used them several times. Their link>> www.healthcheckusa.com (not available outside of US).

mgal, as you can tell by my reply to Deborah, you have picked all the tests that should give thorough evaluation of your thyroid condition and treatment. You do have my prayers on this and glad to see you take advantage of prayer-help from others, I'm a firm believer in divine help and strength
.

Dear Jim,

Today Saturday went again to the clinic hoping that blood tests would be ordered, at least the good news is that I convinced the clinic doctor to order me at least B-12,Folate, and also CBC and ESR, cause as I told you before sometimes I suffer a lot from stomach upsets. Last time that I did the blood tests CBC had been indeterminate so they are going to check it again. That is the lucky side, the hard luck is that regarding the thyroid, I told the doctor at least oder me the antibodies test, told me there is no need it is within range. I told the clinic doctor to do it to be on the safe side, and told me the procedures are these and I can`t sorry :-(. The last thing maybe is to try and do them in a private clinic, I think that TPO ABS and TG ABS costs a fortune to do them private. Even though that it bit impossible to do them I visited nearly 4 docs and told me not to worry tsh is normal level.

regards,

mgal

mgal,

You are doing what thyroid patients should do and are advocatig for yourself to get the most definitive diagnosis and best possible treatment.
I commend you for this and for the great example you set for other patients. I hope you don't hit any more walls as you go along with this process.

Hi Jim,

How are you ?? Hope that everything is ok..well I am writing to give you an updated of what happened from last time that I wrote, now it`s been a while not writing.

Well as you know, I did the tests of the vitamin B-12 and did me again a range of same tests of last time because of MILD anemia.

Finally at the clinic I found a doctor which told me hmm your thyroid is 3.01 it`s a bit low seems. Well I told him about my research done on the internet and he seemed to be more open- minded compared with other doctors. He suggested till now not to worry and try to relax and within 2 months time I`ll do the tests again to see what happen. What do you think?? Do you think it is a good suggestion? or maybe I`ll go and do tests in a private clinic??
Well he told me, that why I am asking you the expert of thyroid :-) that it might be due to the fact that I was sick it might effect my thyroid?? Is it true?? So it means that it can fluctuate a lot???

The following are the new test results together with those of last time for comparism:
Vitamin B12 558pmol/l (142-725)
Folate- 27.9 nmol/l (6-39)
white blood cell count 5.30 * 10^9/l (3.5-11)NOW IS 4.10
neutropholis 2.57 * 10^9/l (2.5-7.5)NOW IS 1.84
lymphocytes 2.08 * 10^9/l (1.6-3.5) NOW IS 1.78
monocytes 0.53 * 10^9/l (0.2-0.8) NOW IS 0.34
eosinophils 0.09 * 10^9/l (0-0.4) NOW IS 0.08
basopils 0.03 * 10^9/l (0-0.1)NOW IS 0.03
red cell count 3.80 * 10^9/l (3.9-5.6) NOW IS 4.10
haemoglobin 12.0 g/dl (11.5-16.5)NOW IS 13
haematocrit 36.7% (36-48)NOW IS 40.2
mean cell volume 95.6 fl NOW IS 97.1
mean cell hb 31.3 pg NOW IS 31.4
mean cell hb conc 32.7 g/dl NOW IS 32.3
red cell distribution 11.5% NOW IS 12.
platelets 218 * 10^9/l (140-400) NOW IS 200
mean platelet volume 11.1 fl NOW IS 11.1
Erythrocyte Sedimentation Rate 9 mm 1st.HR (10-14)

mg

Hi mgal,

It's wise that yu advocate for yourself and also have a Dr. with an open mind in allowing patient-input.
Your lab ranges look pretty good from what I can tell as a layperson and your B-12 is at good level as well being above mid-range.
I'm a little surprized your Dr. said your thyroid is a little low but wants to wait the eight weeks to retest. He may want to be really sure with the level being somewhat borderline. Two months isn't much time to wait and see how the level reads on a retest.
We'll be curious to see the new thyroid levels when you do get the retesting done, if you can post it again. Stay with the communicating and input with your Dr. and it will help zero in on best diagnosis and treatment. It sounds like you're doing a great job with elimination and zeroing-in on possibles.

hi jim,

thanks loads for yr reply.
My Tsh test was done on 08/07/08, well if I do it in november maybe the test again 4 months would pass, what do you think?? Maybe than will see what happen. Yes sure everyhing that would happen, I will post it here.

Thanks

mgal

mgal,

About every eight weeks is good for retesting patients that are in process of being leveled-out on thyroid hormone medication therapy or who are at those "iffy" points of heading toward abnormal levels. Actually October would be at 8 weeks for you and if you want the retests done at about that time (around Oct 7), I would discuss it with him and be firm in wanting it done then.
If it looks like it hasn't moved much by then or is even better normal range he might then want to wait several months before a retest.
I may have already suggested this but when symptoms that match thyroid ones are being experienced, I believe the "thyroid antibodies should also be tested for. These are the TPO and TG antibodies and can detect thyroid disease in the face of normalish TSH and thyroid hormone levels.