Been assigned to a new GP, it's quite plain she doesn't like me, perhaps I've just got too much to say and too informed infact she told me to stop reading up on this. I consulted with the very nice Dr Skinner before he sadly died. He told me to increase my thyroxine until I felt better, I did from 100mcg gradually up to 175mcg I felt so much better, good sleep, no stiffness, lower cholesterol, lost weight and hair slightly thicker...after a while I dropped back to 150. For the past year my main problem is insomnia and an aching hip. So recently I've gone back to 175mcg.
My recent blood test results : Serum T4. 20.2. (9.00 - 19.00 pmol/L
TSH <0.01 (0.35 - 4.94 mu/L
Serum free T3 5.50. (3.25.- 6.21 pmol/L
Me GP tells me to reduce down to 125mcg ASAP that I'm dangerously high and close to being overactive and this can cause Annuerisms and what's wrong with being overweight. She tells me my insomnia and stiffness has nothing to do with my thyroid and I just don't believe what she tells me. Told her I didn't want to go back to feeling the way I did...at this point she was losing patience with me.
What should I do please !!!
As always I thank everyone for their help and advice, it's so comforting to be able to come on here and get advice from people I trust.
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ElspethMann
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Elspeth, were those results based on 150mcg or how long after you started 175mcg?
How's your ferritin and vitD? I had hip and knee pain when vitD was deficient, it cleared when vitD was corrected. Resumed 6 weeks after I stopped supplementing and cleared a few weeks after I resumed supplementing.
Thanks for your reply...I had been on 175 for ten days but I didn't take any the day before my blood test. During that time my sleeping improved so much infact slept I slept most of those night, however still got stiffness in my hip. This GP is young and new !!! Do you think perhaps I should alternate between 150 and 175. I really couldn't go back to how I felt before seeing Dr Skinner...many thanks.
Elspeth, Bottom line is you should take the least amount of thyroxine you need to feel well. You are nowhere near being overactive which would mean FT4 and FT3 being over range. I think your GP is confusing the risk of aneurism with the risk of atrial fibrillation which is a common risk in long term hyperactive patients but less likely due to slight overmedication in hypothyroid patients whose FT3 remains within range.
On 175mcg your TSH will become slightly more suppressed and your FT4 slightly higher. It really isn't a problem if your FT4 goes to 23/24 as long as your FT3 remains within range. Dr. A. Toft is an ex-president of the BTA and commented in Pulse Online about dose/thyroid levels in this link thyroiduk.org.uk/tuk/about_... Email louise.warvill@thyroiduk.org.uk if you want a copy of the article to show your GP.
Are you taking vitamin D? I've seen posts where people say that it helps with aches and pains. Hopefully somebody will comment on your blood test results.
GPs don't like informed patients and her telling you not to read up is bang out of order. The best thing you can do is to continually read up on your condition as knowledge is power. You could always request an appointment with an Endo?
Your GP doesn't understand how the thyroid works and is trying to dose you based on TSH, which is no use when you are on thyroxine or NDT or T3. You don't seem overactive - your T4 is slightly over but your T3 is in range and Dr Toft (ex president of British Thyroid association who surely knows more than your GP) says in his book that to feel well many patients need suppressed TSH and T4 at the top of or slightly over the range. Someone will be able to give you exact quote and page number in the book.
Keep on at a level that makes you feel well, else what's the point of life? Tell her you'd rather have a short, happy life feeling well, than a drawn-out painful existence (though I don't think that's really the choice).
Can you get a different GP? Your seems determined to keep you ill.
Yes, always ask for chapter and verse! Tell them you don't doubt them (hypocrite! lol) but you would like to see the proof in the form of a research paper or some such. Odds are, they won't be able to provide anything!
She told you to stop reading up on it because it makes her feel inadequate and shows up the gaps in her knowledge. That's her problem, not yours! Full marks to you for knowing your own disease!
I agree with rosetrees, that's a new one on me! But in any case, you are far from what she so ignorantly calls 'over-active' with a T3 at the level of yours. Tell her the correct term is 'over-treated', 'over-active' is when the gland itself produces too much hormone, not when you take it through your mouth!
What should you do? 1) Trust in Dr Skinner. He knew what he was talking about. 2) Self-treat and cut out the doctor, you know more than she does, anyway. 3) ... (can't put that here, this is a family show!) Ignore her!
Oh messed that one up...yes I will do what's best for me and I how feel...never felt better. I think I'll stay away from my GP for a little while and work things out for myself...many thanks for your comments xxxx
Thanks for your comments everyone, just what I wanted to hear. She then told me my cholesterol was raised, I said it's the lowest it's been for fifteen years, she had nothing to say about that. She's young and new !!!
In my, sadly very long, experience the young ones panic, and don't understand, and the older ones have seen enough people who don't do will on the standard protocol (which isn't standard or a protocol as far as I can see) to be happy to see their patients feeling well.
As far as I know aneurism isn't linked to thyroid status, but is linked to high blood pressure. There is a statistical risk of osteoporosis and fracture on people on T4 only, whose TSH is very low(ie suppressed). The trouble is that most of us will happily trade that risk for feeling OK now. I tried suggesting to one young inexperienced GP that if the only option was to feel like crap for the next 30 years, then I might as well end it now. She didn't respond to what was clearly a suicidal thought the way she should either.
My suspicion, but I have no scientific evidence, is that the real risk is having no working thyroid - because the thyroid produces the hormone calcitonin, which is involved in bone formation. If we supplement with T4 only to the point where we are active, the risk of falls and breaks increases, but without the protection of calcitonin. Interestingly you can get calcitonin supplementation if you are osteoporotic and can't take the normal medication.
I personally self-medicate with NDT, which contains calcitonin, and have now found a GP who is happy to support me with tests while I buy my 'stuff' on the net. If I hadn't found him I would simply have had to self-medicate without testing. We have talked about the risk of fracture, and he's just written me up for a bone density scan, since I was osteoporotic before I became hypo, as there is a long family history.
Your T4 is not too far over and T3 is within range. If I were you I would try 175 / 150 on alternate days. That will probably bring your T4 down a little and you may still feel well.
If it is still high, try an extra day of 150.
I am not sure what you do about about your irate GP. Is she expecting a new thyroid test in a few weeks? Maybe you could try a few days of 125 and if you feel bad, increase as suggested above. At least you can say you tried, with all honesty...I always think it's better to tell the truth, even if it is a little veiled, as it is so easy to catch oneself out and forget what has been said! Is your GP practice very particular about your repeat prescription or can you get away with ordering more?
I was also a Dr Skinner patient and because he taught me how to look after myself, I pretty much do my own thing. Hope it works for you.
The word "overactive" is usually reserved for when the thyroid is producing too much thyroid hormone. The usual words used when you have too much thyroid hormone are "over-medicated" and/or "thyrotoxic". I might be rather pedantic, and I don't usually pick people up on this, but as it was your GP that said it, I'd rather hope that she would have used the appropriate term.
There does appear to be an association between hyperthyroidism and various aneurysms - but there are only 53 papers in PubMed which include both "hyperthyroid/ism" and "aneurym(s)", and quite a few of them appear irrelevant. I doubt that being (possibly) slightly over-medicated is going to suddenly make you likely to have an aneurysm.
Perhaps, as she's noticed you like to read up on stuff, you could ask her to point you in the direction of the research paper where it's been shown that having a suppressed TSH causes aneurysms. She won't be able to, of course.
Nothing more to offer but sympathy and a hug. I've gone it alone for quite some time now. We shouldn't have to go it alone, but when we know more about our own health than doctors, that's how it has to be, unfortunately.
Look at your T3. In range. She is wrong, wrong, wrong. You are more likely to have that sort of problem if you are under-dosed because the blood will clot more readily.
In addition you can have congestive heart disease from being under-dosed. I was severely under-dose for about 7 years and my heart was enlarged and I had to go on blood thinners plus I had asthma. Now I am closer to optimal dose my asthma has cleared up and I have had to reduce the blood thinners because I don't need as much.
I did mention that maybe it would be good to combine, she said my T3 was fine. I had noticed that as I got the printout before I saw her. We just won't ever get on very well...I said then I should see an endocrinologist, she said next time but you must reduce your dose ASAP...which I'm not going to do. Uphill struggle for sure. Thanks for your advice x
Perhaps you could show these references to your GP.
“First of all, TSH is not a blood pressure. Blood pressure is a surrogate endpoint for clinical effectiveness and blood pressure has been correlated with mortality and morbidity. TSH has not been correlated in any prospective study that I’m aware of with clinical symptomatology of thyroid disease. (Toft A. Which thyroxine? Thyroid 2005; 15:124-6)
TSH is a poor measure of severity of tissue hypothyroidism.
BMJ 2003 326:295-296
Initiation of replacement therapy should be guided by clinical presentation and circulating thyroid hormones and not by TSH concentrations, a point discussed in an editorial by Toft and Beckett (p295)
British Medical Association book, Family Doctor Guide to Thyroid Disorders,
by Dr. Anthony Toft ( past physician to the Queen) where he states,
In the paragraph, Thyroid Blood Tests, Dr. Toft states that, " Typical results would be FT4 24 pmol/l and TSH of 0.2. In some patients a sense of well-being is achieved only when FT4 is raised, e.g. 30 pmol/l and TSH is low or undetectable. In this circumstance, it is essential that the T3 level in the blood is unequivocally normal in order to avoid hyperthyroidism."
Hi Glynisrose thanks, I'm feeling pretty good and after a year or more of insomnia I'm actually sleeping again and that's the best thing of all, very stiff hip but hope to sort that out. Hope you're feeling good too. Xx
Hi, I used to see Dr Skinner and he was always interested in hip pain. Mine definitely comes back if I'm undermedicated. It can be excruciating, and then it can just disappear when I up my dose. Insomnia and stiffness are definitely to do with thyroid. I get my best bit of cortisol at night and it keeps me awake!
How are your temperatures? Do you ever check your early morning one before you get out of bed?
Do you have good levels of iron, b12, folate, vit D?
My TSH has been 0.02 without the slightest sign of being over medicated. The times I have cut back for doctors and made myself so much worse. My temperature I use as a guide. Sure enough the colder I am the worse the hypo symptoms are.
Hi Helcaster...good to hear of your symptoms, pretty much the same as mine and of course my new GP insists they are not thyroid related ??? Eventually she gave into me and suggested I have an X-ray, just to get me out of the surgery. Encouraging to hear what all these good folks have to say. I've had this hip pain for just over two months and I know the day it started, I made a note in my diary. I'm now alternating between 150/175 mcg, who knows its just trial and error. Don't feel like seeing my GP again and asking for more test
When your bloods look "normal" to your GP the most glaringly obvious symptoms can't possibly your thyroid..... Wrong. I have read that being hypo can reduce the flow of blood to nourish the hip joint, try and look this up. I'm sure we had someone on this site who had to have his hip replaced because of this. Ring any bells anyone?
It's rotten the ignorance and hostility we can face, it doesn't help us at all!
Thanks Helcaster...I most certainly will look this up...my hip is showing no signs of improvement. I can hardly walk up the stairs in the morning. Will do some research. Yes so right nothing by hostility and ignorance, I was made to feel like a hypochondriac time waster. All then best and thanks for that info xx
Hi Helcaster...just found a link...Osteonecrosis. Interesting reading, I will be having an X-ray in the New Year but they say that may not be sensitive enough to pick this up and a MRI would be more precise. More info to be armed with, my GP will run a mile !!! Thanks for that xx
My GP wasn't too happy about my self-medicating with NDT (now up to 300mg), after years of being fobbed of with a TSH of 7.5 and 8 by previous GP of same surgery. After medicating for 4 months my TSH was 1 and T4 from 12 to 21. I explained to her that despite high T4, still don't have much energy and could I have T3 tested. She said laboratory will refuse to do it. I said in that case I will just start taking T3 as well, as I suspect that I'm not converting due to iron being low and not being able to increase as supplement iron just increases Ferritin. I then asked to be referred to a specialist, which she agreed to as she saw she was over her head on the subject. Will wait to see specialist before starting T3. Need to find out why I have inflammation, CRP 4mg (0-5mg) which seems to be blocking iron increase.
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