I'm overweight, and need a hip replacement: because I'm in severe pain and now to cap it all, i'm hyperthyroid: I'm still obese: controlling my calories has led to a 7kg loss over 12 months following super strict 1200 cals/day: my endocrinologist says it is the condition leading to the weight loss and suggests I'm lying: thanks! 1200 cals/day for 12 months: it was grim and boring!!! I'm scared about what happens after radioiodine. I am a neuroendocrinologist myself, so I know the likely outcome, but in reality????? I will have to wait until I lose weight again before the hip replacement because I will not fit the BMI defined by my NHS trust (I do now, but because I'm hyper and at risk of a thyroid storm, they won't do it in case I have a coronary.....). I can't go on....
The pain is endless. I do one thing and then another crops up.....I know I will get fatter, but God, please, don't judge me just on my APPEARANCE. I am allowed to be concerned. You can comment on my ability: I may be good, I may be bad, but it has nothing to do with the colour, length of my hair or the size of my butt. People judge me without knowing..... Fat cow...yes but Cambridge PhD, Head of Department....etc....good friend/colleague..... What's the Point ??
Sorry to hear of your health issues. Hyperthyroidism usually speeds up the metabolism as excess hormone is secreted and weight loss is a common symptom.
Hormones are better transported and utilised in lean muscle but an excess should speed up the absorption and uptake of glucose even if overweight. Have you looked at insulin resistance (when sugar is unable to enter the cells although high in circulation) ? . ..
An excess of glucose in the blood is turned into fat (lipogenesis) by the liver (and to some degree the fat cells if excess fat is carried) in an effort to balance blood sugar levels. Once made into fat, it can not be converted back into blood sugar but has to be burnt off as calories so becomes difficult to lose.
Cortisol is a stress hormone secreted in the adrenal glands that react to any stress whether physical or mental. When the body is ill ( stressed) elevated cortisol levels can impair good thyroid function by suppressing the HPA axis and decreasing T4-T3 conversion, slowing metabolism & encouraging weight gain.
Cortisol helps balance blood sugar but will increase glucose levels when elevated. Unbalanced cortisol also instigates an immune response where inflammatory cytokines (TH-1 & TH-2 ) are released, down regulating the HPA axis & suppressing thyroid receptor sites ... a bit like insulin resistance. This means no matter how much thyroid hormone you have (even if elevated as in hyperthyroidism) it will not be utilised and metabolism will slow, encouraging weight gain.
Not meeting your body's needs for fuel will stress it further so it is important to eat regular meals including protein, low GI carbs and healthy fats.
Have you been diagnosed with Graves Disease ? ? .. As it is unusual to be gaining weight with Hyperthyroidism have you been tested for thyroid antibodies TPOAb and TGAb ? ? ..Hashimotos Auto-Immune Disease is very common and would account for fluctuating hormone levels testing as both HYPERthyroid and HYPOthyroid and could account for weight gain. It is unusual but possible to have all sets of antibodies.
Have you had Vit B12, Vit D, folate and ferritin tested ? ? ... If you post thyroid & nutrient blood test results complete with ranges (numbers in brackets) members will comment.
Compromised adrenal health is known to bring about anxiety, depression and feelings of low self worth. The point is to look ahead and find a focus that makes you happy and helps you through this difficult time. I lean on my yoga which is assessable to any ability but others may find contentment in reading or knitting (?) We all feel down sometimes but real friends see the person underneath.
I really feel for you. I've got Hashimotos and find it very hard to lose weight - it's a very slow process. I've found that a vit D spray used daily has made a big difference to how I feel - it seems to help with that inner heaviness that is so hard to manage. BTW Well done for losing 7kg - that's not insignificant!. Good luck!
Can so relate. Not everyone loses weight with being hyper, as classic medical teaching leads you to believe. Know that the body is only a vessel for short time here on Earth. What your contributions are to society are of much greater value than whatever "judgments" you may be perceiving from others based on your size. Just wish society would start helping to avoid stigmatizing weight issues anymore too.
My daughter was losing weight rapidly and the university GP told her, 'don't be stupid you would be fat if you had an underactive thyroid'. Apart from that being downright rude, it goes to show how little doctors understand about hyper and hypothyroidism as shown by the original post in this link.
Montmorency68 has to fight their case as we all have had to do.
I have Graves' disease and haven't had weight loss with it, I've had to loose my excess weight my own way and yes it's hard.
Sorry I have no advice as I'm newly diagnosed and just getting my head around this myself. Just wanted to wish you well, I hope you manage to get yourself sorted.
Have you had a thyroid scan and antibody check to confirm what's going on?
I watched a really interesting documentary about weight with Giles Yeo. The causes of obesity are multiple, but one thing that worked with my weight loss, which was mentioned on the programme, was changing my diet to a more Paleo one (a bit like a Mediterranean diet minus the pasta and pizza) and no white flour at all. I think this must have starved out all the useless gut flora that was making me fat. Apparently some people have a genetic predisposition to hosting fat-making gut flora. The problem was, that the detoxification diet made me prone to infection and I got ill with colds etc while losing weight. I then discovered Kefir (recommended by a Polish friend) trillions of good bacteria that improve mood and help with digestion - it made a big difference. I also recommend fatty acids including vitamin D; B12 (sublingual) with folate and getting Omegas in the best ratio of Omega 3 to Omega 6, plus magnesium - essential for thyroid /low energy/low mood.
Your post was interesting, one thing for sure by some of these posts is that some meds are responsible for weight gain in some people but that is often denied by the medical profession. Yes I am hypothyroid and struggling with being overweight.
I put on weight as a hyper too and was "significantly unwell" according to doc and endo. In fact I put on 2 + stone? I still miss my whole packet of chocolate Hob Nobs while deciding how many yogurts etc I would have for breakfast! I had a compulsion to eat mostly carbohydrates and dairy. Which was really alien to me as I used to eat to live before sick. Even joked with the doctor why couldn't I have the perks of illness. Went up from size 8/10 to 14/16. Only able to go back to normal weight and well being with T3. When on T4 ate 1000 cals a day sometimes less and didn't loose an ounce. If I ate more than 1200 I would put on weight. I kept a data diary of food in take, basal temp, BP, HR. Now normal diet, normal exercise right weight. Well a tad heavier due to age and a love of chocolate.
Can't they make you euthyroid and do the hip op. Could make an exception of BMI given thyroid problem. I know I had to drink this stuff, can't remember what it was called, every morning for a few days before thyroid op and would make me euthyroid and safe to operate and remove thyroid.
Try not to take any notice of people who call you names nobody has a right to judge you and remember they are probably lacking in the grey cell area and should be pitied.
Hi Montmorency, well, one thing you can count on is that nobody here is going to judge you on your appearance!
But, I'm a little confused... Did you put on weight before you became hyper? Were you hypo before? Have you had your antibodies tested? How long have you been over-weight? Is it a life-long thing? Or came on suddenly?
Ignore your endo, he has no idea what he's talking about, anyway. Very few of them know anything about thyroid. And they're taught in med school that all patients are stupid and liars - no matter how many diplomas they have!
It would be very interesting to see your blood tests - if you have a copy. See what's been tested, and what hasn't. Post them on here, with the ranges, and that'll give us a better idea what's going on.
It's not inevitable that you're going to put on more weight. What you should do is sit your endo down and agree on a plan of treatment BEFORE you have the RAI. Get it in writing that he is not going to dose you by the TSH, that he'll test the FT3, and continue increasing your dose until you are well - not just until your TSH is somewhere in-range. Remind him that having been hyper, your TSH might never come up again, so that adjusting your dose to try and bring it up, will make you very ill; that the TSH is irrelevant anyway once you are on thyroid hormone replacement, and that a suppressed TSH of and by itself does not in any way lead to osteoporosis and AF if the FT3 is reasonable. If you get all that in writing, you stand a good chance of being well treated after your RAI.
I would love to see a full set of thyroid test results for you. You could get them done privately, without needing permission from a doctor, for under £100. You may be able to get a discount off the price of testing if you mention Thyroid UK, but it does depend on the test you choose. See this page for more info :
you will see tests called "Thyroid Check Plus Six", "Thyroid Check Plus Ten",
"Thyroid Check Plus Eleven", and "Thyroid Check Plus Twelve".
The Plus 6, Plus 10, and Plus 11 can all be done with just finger prick testing (microtainer), but the Plus 12 requires a sample to be taken from the elbow (vacutainer). I would suggest doing the Plus 11 for now, if you can. It tests the following :
TSH
FT4
FT3
TT4
Thyroid Peroxidase Antibodies
Thyroglobulin Antibodies
Ferritin
Folate
Vitamin B12 (NOT ACTIVE B12)
C Reactive Protein
Vitamin D (25-OH)
One thing that is very, very common in people with thyroid problems is low minerals and vitamins. Being in range isn't sufficient. You need to be at an optimal level, not just scraping along the bottom of the range. Many of us find that muscle and joint pain reduces quite dramatically if vitamin D levels are increased to optimal, for example.
Are you taking drugs for osteoporosis? Do you take PPIs or other drugs (prescribed or over-the-counter) to reduce stomach acid? Do you concentrate on supplementing calcium and nothing else?
Do you take any other drugs and/or supplements?
What is your diet like? Do you eat fat? If yes, what kind?
One of the things that always worries me about people coming here and saying they are hyperthyroid is that I wonder if full testing has been done. If it has, then fine, I believe it. But if only the TSH has been done (to save money), then the person may have pituitary problems, not thyroid problems. Or if only TSH and Free T4 has been tested then it may turn out that Free T3 is low - but Free T3 testing is rarely done, so how would you know?
If you are a neuroendocrinologist, then I suspect you may find some of the things thyroid forums will tell you a bit hard to swallow if you've had standard thyroid training. But the people who come here are the ones that standard treatment and testing failed to help. And many of us manage to make ourselves a lot better. Some even return to full health, although they may have to take various thyroid treatments and nutrients to keep themselves that way.
For a finger prick test the company you order the test from will send you lancets to prick your fingers, along with instructions on how to do it effectively. (Ask for advice on here from people who have already done it as well.) You get sent little vials or test tubes to drip the blood into. You then have to send the blood samples back to the company through the post. The results are usually returned to you via email.
If you order a test that requires a full sample to be taken from the elbow, then depending on the site you order from you may find phlebotomy is included in the price of the test. This is true for the following two sites (I'm sure there must be others) :
If you have to arrange your own phlebotomy there are various ways you can do it :
1) Ask a friend/relative/colleague who is trained in taking blood samples.
2) Phone up your GP surgery and ask if their practice phlebotomist will undertake phlebotomy for you for private testing. Tell them you will supply the instructions and test tubes for the blood taking. Ask how much they will charge. I've never done this because I don't want to discuss my private testing with my GP surgery.
3) Same as number (2) except phone up the phlebotomy department at your local NHS hospital. My local hospital phlebotomy department charged £18 the last time I saw the signs about it. I think prices are rising rapidly though. I've used this method. I didn't even give my name and I paid in cash.
3) Ask any local private hospitals the same questions. Some of them will only do it if you take the test through them and see a doctor. If anyone says this, then obviously run a mile. Seeing a private doctor is what you absolutely must avoid when keeping costs down.
4) Pay a self-employed phlebotomist or a mobile phlebotomist - you will have to do your own research for this option. Ask the company you want to buy a test from for help on this before you order the test. There is no point ordering a test which requires blood sampling by a phlebotomist if you don't know how you can get this done.
Just a quick check to make sure you are hyperthyroid and it is not resistance to thyroid hormone (RTH). What are your TSH, fT3 and fT4 numbers? How long have your been hyperthyroid and what are your symptoms?
Also, if you are hyperthyroid with a suppressed TSH for some time it can down-regulate the hypothalamic pituitary thyroid axis which means your TSH will be lower than it should be. This will be relevant after your RAI treatment.
My comment wasn't meant to be rude, but I was just curious as I did not see anyone mention it, and it is a good opportunity for us (HU) to possibly get some feedback from a member of the ENDO community.
Not rude at all! I have spent many hours with medics telling me stuff that I know is wrong, but when I challenge them, they don't like it!! I'm a researcher, so considered to be "not an expert", despite me keeping up wth current science, and they dealing wth diabetes (which to be honest, is their major problem).... I still need to be assessed for Cushings....my knowledge suggests that this may also be an issue....
Yes I did. But, at the risk of being offensive to Montmorency, it is possible she has been taught about the thyroid the same way doctors are. And we all know how often we (thyroid forum members) disagree with the conventional medical establishment. And most of us know we are considered to be fat, mad, middle aged, menopausal women who should be prescribed anti-depressants and then ignored because our blood tests are in range and every symptom is in our heads.
Exactly. Not being offensive at all! I teach menopausal physiology to my students...and I'm not menopausal, but the signs and symptoms indicated Cushings before the hyperthyroid issue arose. I had a non-functioning thyroid cyst for about 10 years: drained twice (yuk), but there must be a somatic mutation that has converted it in to a hyper secretory nodule. No one has considered a pituitary problem....
Another (rarer) possibility is your hypothalamus could be playing up.
The pituitary or hypothalamus could be damaged by hitting your head - doesn't have to be particularly hard. Or whiplash is another possible cause. Sudden loss of large amounts of blood e.g. during childbirth can cause problems too.
Tumours could squash the pituitary or hypothalamus as well. Infections are another cause of damage.
Note that pituitary or hypothalamus damage is rarely considered by doctors because they say it is rare. Therefore they rarely test for it. Therefore it gets even rarer!
I told my brand new Endo (my 4th) about my TSH, that regardless of my dose of T4 (synthetic or NDT), has always been suppressed, so please ignore it - my TSH level being more of a bother to Endos than it is to me. Amazingly he suggested an MRI of my head (very scary for me)! I did it just last week - and what do you know, I have a tiny lesion on my pituitary! We are not talking brain tumor nor anything dreadfully large, it is 4mm, but it would suggest that my pituitary has been malfunctioning for a long time (i.e. practically no TSH). I was therefore under medicated by a couple of stupid Endos for three years. I think I have finally struck gold in the Endo ranks, I hope he sticks around.
Oh, and if anyone ever has to have a brain scan/MRI, it's not too bad. One person in the waiting room says that he just has a 20 minute nap. I couldn't sleep that first time but I think I will calm down and relax if I ever have to have another one (doc suggests in 2 years).
They don't like prescribing antidepressants now, (costs too much money) they want you to go for Cognitive Behavioural Therapy. I am cognisant of what makes my depression worse, (stupid doctors mainly), but knowing what it is doesn't change it. This is just one more example of doctors who are taught about things but have no real understanding and because that makes them feel inadequate they are less than helpful to us. Rant over. I also am hyperthyroid and overweight, I did read somewhere that this is quite common because although your metabolic rate speeds up your appetite increases.
It seems to surprise docs that you can be hyper and put on weight (as it isn't "classic") but people do. However, you might now be on too much carbi and be hypo. Can you post your latest test results?
No TSH (undetectable levels) v. high T3/T4: hot all of the time, but fine, but HR really high, can't sleep, feel crap: in the UK you have to ASK for a T3. Other bloods fine. I'm a scientist, so the endos don't think I know anything........ I'm looking for patients wh have experienced stuff, rather than me over-medicalising everything, which I do. What can I expect after I 131treatment? I "know" the text book stuff, but as you have all said, it's not the reality......
Are you taking Carbimazole? If your FT4 and FT3 remain high your dose is inadequate. Beta blockers can help reduce heart rate until Carbimazole reduces thyroid levels. Hip surgery should be possible when you are euthyroid on Carbimazole.
Most people will become hypothyroid within 6 months of having radioactive iodine ablatement. Some become hypothyroid very quickly, others find hyperthyroidism worse initially as the thyroid may dump hormone as it dies. It can be debilitating waiting until TSH and thyroid levels are abnormal enough to be prescribed Levothyroxine.
My sister had RAI 4.5 years ago to ablate her overactive thyroid after hyperthyroid remission failed. She wasn't quarantined but was subject to 21 days contact and travel restrictions. She doesn't regret having RAI but it has made her Graves thyroid eye disease worse although not bad enough to require eye surgery. Overall she is happier being hypothyroid and did well on Levothyroxine until recently when her TSH shot up. An increase in dose restored euthyroid status but symptoms are lingering. She has gained around a stone in weight in 4.5 years but was underweight when she was hyperthyroid.
Many members on the forum complain that they experience weight gain on Levothyroxine despite exercising and following restricted calorie diets.
The medical profession often pours scorn on saliva testing for cortisol. This is despite the fact they use saliva for midnight testing of cortisol levels when doing tests for Cushing's Syndrome/Disease or Pseudo-Cushing's.
People with Cushing's tend to lose the curve and end up with high cortisol throughout the day - it will become a flat line.
Addison's Disease will also show a flat line for cortisol output but it will be a flat line at low levels.
Read up about ordering the adrenal saliva test and how to get your results here - Genova have made accessing their tests rather more difficult than other testing companies :
Hi, you've had some great advice on the replies. I put on weight when I started my carbimazole and I'm now on PTU and can only lose weight if I don't take my meds. Eating to fuel your body is a good tip, I'm stuck in a cycle of sugar and caffeine which is also stopping my weight loss x
No treatment proposed apart from radio iodine. I can illegally do a spit test as my colleagues can do it. Just feel crap all of the time and I'm scared I will feel worse....
It sounds to me as if your treatment (or lack of it) has been extraordinarily negligent. I think your choices are to find yourself a new endocrinologist or to treat yourself.
Personally I'd rather treat myself. I care about how I feel. Doctors generally don't. I don't know if I've been lucky (or forgetful) but I don't think anything I have done to myself or any of the experiments I've tried have made me feel as bad as I did when the doctors were telling me there was nothing wrong with me.
When I got over the fear and realised I was in control I almost cried with relief. I wouldn't allow a doctor to be in control of my thyroid treatment ever again.
Firstly this is just a not-very-scientific comment: I would avoid RAI treatment and pursue some of the solutions suggested here first, esp. adjusting your Carbimazole medication. I say this simply because I just feel, whatever else is the RAI destroying? Yes I know that it is only supposed to be the thyroid cells which will take up the Io, but that is all we know at the moment. But, I have not researched this process, so take it for what it is worth.
My second comment is regarding the hip replacement. There is some research well under way in one of the big Birmingham hospitals into stem cell research to regenerate your own cells. Perhaps you could look into this and have an injection to regenerate your own cartilage cells between the bones of your hip joints. By now they probably have a human experimental group - and they have been doing this research for years now, so it would not be too risky. Another point on this topic is that stem cell treatment is being done in Germany and joint cartilage regeneration is a fairly simple application, it's not like trying to regenerate heart or brain cells. And lastly, I have arthritis in my knees and I am holding out for this therapy while my friends are having knee replacements - and not all too successfully (but we are in the US, where they are very paranoid about new techniques).
very few are interested..but you have autoimmune disease and it can be reversed or put into remission, through functional medicine. Mark Hyman and isabella Wentz..goole them and reversing autoimmunity.
If this is happeneing, lower the carb..find a new doctor or do it on your own..i am.
I truly sympathise with you, I have graves disease and have gained weight and like you I am in so much pain and have been for a year now, I am at the end of my tether with the battle I am having with the NHS. I hope you get sorted soon and get on the road to recovery so that you can lose your weight.
Hello Montmorency68,,,, I have usually heard that Hyper people lose weight due to their body going faster,,,,,,I hope that this helps you,,,,,may I ask,,have thought about getting some Reflexology,,,,,very good for getting your body feeling better,,,,,and to help with the pain,,,either the Bowen Technique,,,or my favourite Reiki,,,which is very good at easing pain,,and giving you some peace from the pain and discomfort.
You must b e very upset at all the things that need doing,,,,,but first, you need to give your body some holistic support,,,,,hope you get chance to try something to help re-balance your body and rest your mind,,,,,ttfn from Karen.
No TSH, high fT3, fT4 confirms your thyroid is causing hyperthyroidism. I would ask your specialist why they recommend RAI and discuss the options with you. It would seem best to go ahead with the treatment but it is reasonable for the doctor proposing the treatment to spend 10 minutes explaining in more detail why they feel this is the best way forward.
I have hypothyroidism and would recommend slimming world to anyone that needs to loose weight , slimming world is not a diet it teaches you how to eat properly , I have lost 32lbs in a year , which I am so pleased about , because before I found slimming world it didn't matter what diet I followed it didn't work, it's a lot harder with hypothyroidism but trust me you will get there , I would like to loose another 20lb and I don't care how long it takes because it's staying off . Good luck with your weight loss and hip replacement
I've been I131 treated. No other option offered, due to size/position/ compression associated with toxic nodule. Felt really rubbish for two weeks: super tired, gut problems, no sleep, wanting to eat anything in sight, although I am still trying to controlling calories to about 1500/day to prevent gaining too much weight before thyroxine treatment.
Problem I have is that I have gone from years of highly controlled eating, influenced by a parent who was always dieting (and fat, 16st!), who is still, in her eighties, worrying about being fat at 10st, and 5ft 9, who actually looks ill now, but keeps going on about being slim). My weight back then was "normal", 9st at 5ft 7, but I was restricting my food to 800-1000 cals/day to remain so, plus using any fad diet that came along so I wouldn't end up fat like my mum. This was followed with years of "over-eating", i.e. 2000 cals/day ( normal intake) at Uni when I was also a member of a highly intensively exercising sports team. I gained lots of weight and went up to 12st. Couldn't just be muscle!
Three weeks after my iodine treatment, I am now really worried about getting fatter (as I said, I am already large: 14st, and have been trying without a great deal of success to lose weight when I was hyper, and untreated: 1200 cals/day: lost 9kg over 4 months: endo suggested it was the hyper causing the weight loss. Am I going to have to eat nothing to lose when I get hypo before I become euthyroid with treatment???) I hope when I am euthyroid my appetite will go back to normal. Am I being too optimistic?? I'm scared of starting to over control my food intake again.. I have a really responsible job too and I'm concerned about my mind becoming fuddled when I get hypo.... I guess I have an undiagnosed eating disorder of sorts. Problem is, when you are fat, it is seen as a lack of control, whereas being thin is "good", and indicates you are in control.....can't get the hip done either unless I lose more weight....
I guess I have to wait for the 6 week bloods. Maybe I am overthinking.... As a neuroendocrine researcher and a Head of Dept in a Uni, I may be looking for some way of having "regulation" in my life?
Sorry friends for the rant guys, but I know I will get some really useful help/support here! X
I hope that doctors have said you need regular blood tests to find out whether you are still hyper, are "normal", or are hypo. I hope you aren't still hyper, because doctors may insist on repeating the RAI treatment. If your results come back in range and your results are classed as "normal", it could take months or years for the results to show hypo. In that case you may find yourself in the situation that many of us do who have never been hyper - you won't be treated until TSH is over 10, and that is simply sadistic. Don't despair though - remember that self-medication is possible.
The first thing to be aware of, from the point of view of being hypo, is that not eating enough stresses the body and could raise cortisol levels. This is NOT desirable.
Your body converts T4 into T3 and Reverse T3. The amount of each fluctuates. When you need to slow down and conserve energy then the balance of T3 and Reverse T3 shifts to producing more Reverse T3. One thing guaranteed to produce more Reverse T3 is famine. Dieting rarely works for hypothyroid people. It can't, because it produces Reverse T3 in preference to T3 which slows the metabolism and makes people fatter. What you need to do is maximise your health, and maximise your T3, by eating the healthiest diet you can, and that includes fats, proteins, some fruit, lots of veg, and not too many carbs, particularly sugar.
Another thing which pushes the T3/Reverse T3 balance towards Reverse T3 is excessive exercise. Yoga, swimming and walking are good, pumping iron and running half-marathons isn't.
Make sure that you get your nutrient levels checked regularly - the ones that are found most helpful on this forum are ferritin/iron, vitamin B12, vitamin D, and folate. They need to be optimal, not just in range. What we consider optimal may not be a doctor's idea of optimal. Without good nutrient levels the body can't convert from T4 to T3 very well and generally, treatment (and any remaining thyroid) won't work very well.
Sadly, hypo people are generally assumed by doctors to be fat and lazy. If we query the treatment (or lack of it) then we are mad as well. I avoid doctors for that reason, and find treating myself is so much less stressful.
Been controlling diet, put on 6Lbs in two weeks... So I'm going to get fat again... What is the point of this..,, ?
Now finally hypo after being hyper, then RI and several blood tests later. Still managed to lose a couple of kilos over 3 months with VERY careful diet management. On 75mg Levothyronine as from today. Let's hope things improve! Thanks to everyone for their kind advice and tips and support, despite my original ranty post!
By the way, hip won't be done until I lose 6 Kg. NHS rationing in the basis of BMI, despite this being "illegal".... Same surgeon will do op privately. Most people can't believe I'm over the BMI limit.... must be dense! Lol
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