I would be so grateful if you would look at my latest thyroid function blood tests and advise me. I have to speak to my GP tomorrow and I'm sure he will be unhappy with my suppressed tsh, even though I think my frees are fairly good.
I am really glad they have done T4 and T3 as well as TSH, but if course this is only because my TSH was below range.
I have Hashimoto's (TPO > 1300) and am taking 58.3 mcg levothyroxine.
The test report says the result is abnormal and I need to speak to my doctor. Well, we all know he will tell me to reduce my dose of levo! 😕 But am I right in thinking my T4 and T3 are quite good? Is my conversion rate ok?
Any comments and advice on how to approach my GP would be appreciated.
Best wishes to all
Caroline
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Caroline888
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"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the article by emailing Dionne at
Thank you so much SeasideSusie for your helpful - and speedy - response.
I do feel that I should stay on my current dose but know for sure that my GP will want me to reduce it. I've shown him the article you mentioned in the past and he was very dismissive! As per usual, he is totally ignorant about thyroid issues. I'm unsure how to proceed. I feel so much better now and some of my worst symptoms have disappeared completely, so I don't really want to change anything. I have tried to see a different GP who i think may be more knowledgeable, but it's really difficult to see any GP at all at our practice at the moment. Getting a telephone conversation is probably the best i can hope for.
The surgery has phoned me today when I was out so I know it's to reduce my dose. I don't know what to do other than pretend to accept the reduction and then do my own thing! I guess they will want me to drop the dose to 50 mcg from 58.3 so I wouldn't have any problems with supplies. What do you think?
I have this at my surgery. My TSH is suppressed at <0.01
2 years ago:
Dr A says "Your TSH is suppressed, your dose should be reduced".
Me: "I've been taking Levo for 43 years, kept a record of my results for the last 20 years and my TSH has been suppressed all that time".
Dr A: Your TSH is suppressed, your dose should be reduced.
Me: My FT4 and FT3 are in range.
Dr A: Your TSH is suppressed, your dose should be reduced.
Me: An endo reduced my Levo back in 2002, got my TSH just back into range, my FT4 plummeted and I was a zombie, I had to give up work and be looked after for 2 years, I won't be repeating that.
**
3 months ago: (potted version)
Nurse Practioner (NP): Your TSH is suppressed, you probably don't need to be on Levo.
Me: I've been on Levo for 43 years, I think it would have been discovered before if I didn't need to be on Levo.
NP: Your TSH is suppressed.
Me: But my FT4 and FT3 are only about mid-range. Also, TSH isn't a thyroid hormone, it's a signal from the pituitary for the thyroid to make thyroxine when it doesn't detect any. I'm taking Levo, the pituitary detects it so no need to send the signal, hence low TSH.
NP: I'll need to discuss this with Dr B.
NP: That's fine, we'll leave your dose as it is.
Me: (pleasantly, with a smile) That good, you know I would have refused to lower it.
NP: I've really enjoyed our conversation, it's nice to have a discussion with someone sensible.
**
3 weeks ago:
Dr A: Your TSH is suppressed.
Me: "I've been taking Levo for 43 years, kept a record of my results for the last 20 years and my TSH has been suppressed all that time".
..... As above .....
Dr A repeats thyroid tests.
TSH suppressed, FT4 and FT3 about 3/4 through range.
No phone call from surgery so presumably Dr A hasn't seen results and a different doctor has who is happy with them and doesn't require me to reduce my dose.
I would refuse to reduce anyway. If necessary I would tell them that I will source my own Levo and continue with the same dose.
**
If you feel well then you have some choices
1) Fight your corner, saying you feel well on your current dose, your free Ts are in range, etc.
Thank you so much Susie for that! I think you are more gutsy than I am😕 My doctor intimidates me somewhat; he is so certain he knows it all, even though his ignorance is apparent to anyone who has read anything at all about thyroid issues. But I love the fact you can stand up for yourself so effectively.
I will do my best to explain how much better i feel despite my low TSH. Unless I can change my GP though, I doubt I'll get through to him.
Thank you so much for your reply though. You made me smile😃.
I never used to be able to do it. I can only do it now because I'm old and had too many years of being fobbed off, kept ill, made worse, and with other conditions I've been refused referrals and investigations and had to refer myself and pay to find out what they wouldn't look into.
Most recently, managed to get an MRI scan only because my son came to the surgery with me after 4 previous appointments over 5 months with the doctor saying "I don't know what it is, come back if it doesn't get any better". A witness, or someone to advocate for you, makes a lot of difference!
I saw a different doctor for the result of the scan who told me it was fine. I said in that case there must be something causing the problem and I've had 5 appointments over 6 months now. He said I sounded angry as if I wanted a fight. I said no, I'm sorry you've taken it that way, but I'm fed up of being fobbed off when something is clearly wrong. He asked what I mean by fobbed off (FGS!!) and then said "You wouldn't have got a scan out of me" so I replied "I didn't ask for the scan, it was offered".
Sometimes you have to fight back. I wont be walked over any more, I wont accept that they are god-like creatures, and I wont brown nose or stroke their egos. Unfortunately the doctors at my surgery are all the same, worse than chocolate teapots but there is no alternative where I live.
This is from one hospital so of course may not be accepted, have a read through, not sure if you can find something similar for your area
Thyroxine Replacement Therapy in Primary Hypothyroidism
0.2 - 2.0 miu/L Sufficient Replacement
> 2.0 miu/L Likely under Replacement
The Hashi's complicates things as your levels can fluctuate as and when the antibodies do, and there can be times when you need to alter your dose to take account of this.
Thank you Susie. You are an inspiration! I will try to follow your lead, especially if I manage to see another GP. I don't stand a chance of being heard with my current one😤.
I've always had good experiences of the NHS until the hypo diagnosis; now I've lost faith. You think that the doctors are there to help us when we are ill, but recently it seems that they want only to put obstacles in the way of our achieving good health😣. And getting an appointment would be a miracle in itself! All the doctors seem to be away on holiday during the summer months!! At the same time😣. Well it certainly seems like that. I think they take on too many patients so then we all suffer.
The surgery hasn't 'phoned me again yet and I'm not keen to be in touch as I know what they want to say. We're off for a few days R&R in Derbyshire from tomorrow so will do my research whilst away so that I can have my arguments ready if the opportunity presents itself i.e. if I can get to speak to a more approachable GP when I get home.
I am so glad to hear your MRI was fine. I had one of those a few years ago. The hospital was testing me for Parkinson's as I had a tremor and a smell/taste disorder. Came back fine like yours. I now realize that both of those symptoms are on the hypothyroidism list of symptoms. And, would you believe it?, Both have improved😊.
You are so right - some doctors do act as if they are God. The power goes to their heads i think.
Thank you so much for the very interesting and helpful link.
I do hope your persistence pays off despite the doctors and that you manage to improve in health very soon.
Thanks again for your invaluable support. You are a gem!
If your doctor is intimidating try to see another one at the practice, they are supposed to work with you not dictate, I saw 4 befinding one who was willing to learn. .Try taking someone with you for moral support, you are entitled to, a thyroid educated one would be best but even someone who can tell him to put the breaks on if necessary would help (not one who is too bolshy though!)
As seasidesusie says you are not suppressed, your FT3 is not over range so no risk of osteo or heart issues (presuming you dont already have these). If he starts spouting this then ask him to produce his evidence sources (he wont be able to) point out you feel well with absolutely no over- medicated symptoms.
This may help, for starters it sets out what suppressed and low are, I did have a link to the full paper but looks like only the abstract is available on the site now.
You are not suppressed, you are barely below range, stand by your knowledge, take a friend, tell him you feel well, how bad you felt on your last lower dose and that unless he can produce evidence you have considered his advice but are not willing to reduce. IfI know its scary, but once you have done it once it will be easier. I now have an ipad ( and a fat folder) full of links counteracting stupid ideas, the first time I produced it and offerd folder to GP to further their education as those eminent researchers couldnt all be wrong..... the look on his face was priceless and gave me such a confidence boost, didnt bother with him again!
Thank you so much Phoenix for your very helpful reply.
You are so right: i do need to find a better GP. Actually, officially i do have a different GP to the one that's treating me for hypothyroidism, but she's too popular and is never available. I suspect she also has Hashimoto's from what she said during a telecon appointment following lots of tests i had for other autoimmune diseases. So far clear on that score!😊. Obviously a GP who has the same problem would be wonderful. I will persevere.
Thank you for your comments and the link relating to low TSH. I don't, so far as I know, have heart issues but I do have osteopenia. That doesn't concern me too much as I take vitamin D, vitamin K and magnesium plus lots of calcium-rich food. The last scan i had showed a slight improvement which is apparently unusual so I must be doing something right.
My GP is resistant to any argument plus he really knows very little about the thyroid so I think he would respond very badly if I refused to accept a reduction in my medication. There is no arguing with him😤. Hopefully I can nevertheless somehow manage to stay on my current dose.
I love your idea of collecting useful articles in a folder - I'm so glad it worked for you! If my problems with GPs continue, I might well do the same.
Thank you so much for taking the trouble to help and advise me.
Thank you SlowDragon. Yes I am on a strictly gf diet and have had all the related vitamin tests done. All good - folate and B12 a bit above range, vitamin D 108. Ferritin not so good (33) but am on ferrous fumarate for that!
Hi Sue, i have pm'd you but I've either not sent it at all or I've sent it a dozen times😯. I 've not done a private message before and couldn't see that it had gone through. I blame it on my tablet!!
I'm afraid I make sure that my TSH is higher than normal when I have my GP test by taking a lower dose for several weeks before and omitting any for 48 hours before the test and making sure I get the test fasting first thing in the morning. This means I can fine tune my dose according to how I feel, you may need less in the summer for example. When I feel well I take a private test which I don't share with them!
It is a shame I feel I have to effectively "con" my gp but their ignorance of thyroid can make it necessary and I don't have the energy / ability to cope with a confrontation with them I'm too afraid they will withdraw the thyroxine totally.
You could suggest that before they lower your dose then they retest as you feel well at the moment and if they insist on re-testing (which they may not as it costs them!) then reduce your dose a little just until the test (ideally book a retest in several months) and then go back to where you were and recover from the upset until next year and their next test.
With hashimotos it is likely that your results will fluctuate and you can use this to argue for retesting rather than simply lowering the dose.
Yes, I had wondered how I could temporarily make my TSH appear to be a little higher. But currently i am being tested every six weeks so it's more difficult than if the testing was only yearly. I like the suggestion that I could blame Hashimoto's for the low TSH though!
I really don't want to lower my dose. The really weird thing is that I was only on 50 mcg until six weeks ago and didn't feel well on that dose. My GP very reluctantly increased my levo by 8.3 mcg!! That's all he was prepared to do but that tiny increase really changed things for me. I feel so much better now. He started me on 25 mcg last October and only increased my dose in small increments with six-weekly blood tests so it's taken forever to get to this point and I certainly don't want to go backwards. I do feel convinced though that he will want to reduce the dose back to 50 mcg which would be ridiculous. Somehow I have to manage to stay on my current dose.
Thank you so much for your suggestions. You've certainly given me something to think about. It's a pity we have to try to outmanoevre the so-called experts so that we can feel well. But, as they say, needs must when the devil drives!
I recently used Dr Tofts article successfully at my GP appointment after SeasideSusie pointed me in the right direction.
I suggest you compile a page with bullet points notes along with Dr Tofts article (I only included the relevant passages) and anything else that Thyroid UK has in support to take to appointment- it made me feel brave
Make clear this forum and Thyroid UK is found through NHS choices website rather than some random Google search, which helps with credibility.
What a good idea! If I ever find a GP who will listen to me, I will certainly follow your advice. Articles reduced to bullet points - possibly also with use of a highlighter pen - might get a few points across with a decent GP. Unfortunately my current GP won't listen and so far I've been unable to see another one. I've been trying for weeks to see my preferred GP at the practice but she is too popular and is never available.
Phoenix suggested compiling a folder of supporting documents. I think that, together with your bullet point idea, would hopefully help a lot in a discussion with a more approachable doctor!
I'm glad to hear that your appointment with your GP had a good outcome. Thank you so much for letting me in on your successful strategy!!😊
I also had a private medichecks test and told gp I had resorted to that as I felt so ill, burst into tears and said that if I was told running round the village naked would make me well I would drag myself round... (not a pretty sight with all the weight gain) downside is the GP is now going to be absent for 6 months and I am going to have to go through it all with a different GP. I still have a long way to go but I feel it was a step in the right direction.
I've also bought a Medichecks kit as I intended to get the TSH + FT4 + FT3 tests done at the end of the month. Now of course, because my TSH was low, the NHS lab did those tests for me so I will keep it for later on.
I love the scenario you painted for your poor GP - perhaps he needs a six-month break to get over the shock!!😮 No seriously, I think you did really well to express your desperation. I don't think these doctors appreciate how devastating this condition can be. Good luck with the next GP.
Thank you. I'm so grateful to you for your support. From what I've read on the site, I felt my frees were pretty good but was concerned about the low tsh. Great to know that I should disregard it! Now I just have to decide how to tackle the situation when my GP proposes to reduce my dose. He's very bullheaded!!
As you say, I need to stay well, so plan to continue at the same dose whatever he says. I'll just have to scheme a little!!
I would suggest if you feel well. Your T4 & T3 within parameters then even with a low TSH you should not allow a change to your medications if your symptoms are well managed. If they want to lower your medications one refuse on the fact that you feel well. Ask for another follow up blood test? If all else fails ask for an endocrinologist review if they are insistent in medication changes.
I have recently discovered about DIO2 (Deiodinase) an enzyme that allows effective conversion of your T4 to T3. If there is a genetic fault inherited from either one or both of your parents in the DIO2 then it can lead to either the person being a poor or non-converter of T4 to T3. Unfortunately in the UK this genetic test is only obtainable via private tests...see Regenerus Laboratories for Deiodinase / DIO2 tests on Thyroid UK.
In Scotland there is a big push via a petition in the Scottish Parliment: Report on petition PE1463: Effective thyroid and adrenal testing, diagnosis and treatment
. Plus Lorraine Cleaver one of the Petitioners has useful websites.
I have a THS of 0.03 and remain on my Levothyroxine 150mcg, with T4 and T3 within parameters. I also take B complex & D vitamins plus cod liver oil/ omega 3.
Thank you for taking the trouble to advise me. I really don't want to reduce my dose and will do everything I can to stay well. Fortunately my FT4 and FT3 are pretty good and SeasideSusie says my conversion is good too so I will probably be able to avoid the problems involved in acquiring T3. I'm grateful for that😊
I too take supplements: vitamin D and vitamin K, magnesium and a multivitamin. At the moment I have been prescribed ferrous fumarate and vitamin c for low ferritin tho my doctor says i am not anaemic. All my vitamin/mineral levels are optimal except ferritin which is low in range.
Thank you for your suggestions as to how I should argue my case if the GP becomes too adamant that I should reduce my dose. I do feel well now and some of my symptoms have disappeared completely, so I do want to continue with my current dose.
I was interested to see you are doing so well on a super-low TSH. It really does seem obvious when you think about it - we don't need TSH if sufficient T4 is detected in the blood. Thank you for pointing that out.
Although my results have been acceptable to the GP I have felt my symptoms getting worse over the last 2 years. The GPs have always indicated that the results are within parameters so no changes.
My December tests TSH 0.14 was low then the re-test in April even lower with increasing symptoms. However I decided to go for private gene tests on DIO2 and it turns out I have a heterozygous variant gene ( from one of my parents) which means I am a poor converter of T4 to T3. I have an endocrinologist appointment next month.
Your TSH is telling you what your pituitary is doing, and NOT your thyroid level. Doctors are not taught about the thyroid and how it works!
My TSH has been undetectable since 2009 and I really do not care. My Free T4 is just above the top of the range and my Free T3 is just under the top of the range and I feel fantastic. I have a surplus amount of energy, just like I did before my thyroid packed up.
I will NOT reduce my dose for any doctor. If I did then I would barely function. My bones and heart are fine, they wouldn't be if I lowered my dose because I would be thoroughly miserable and unable to exercise.
Hundreds of thousands of people are suffering because of this TSH blood test which was never designed to monitor thyroid disease. Prior to the 1970's there were no blood tests for thyroid monitoring, if only we could go back to those days of increasing the dose until you feel well!
First do no harm = not lowering your dose, and if I were in your shoes (not telling you what to do) I would increase your dose slightly so that your free t3/4 were higher.
Thanks Chippysue. It's so helpful to hear of people who have really low TSH and are doing well! My GP, who knows very little about thyroid issues, keeps on and on about the dangers of low TSH. I haven't been able to convince him that he's wrong to base treatment solely on TSH and the lab ranges.
As you say, blood tests did not exist for underactive thyroid in the sixties when my great-aunt was diagnosed. She did very well for over 40 years with treatment based on her symptoms. She lived to be 93 and was fit and well to the end. It amazes me that supposedly intelligent people like doctors cannot see that TSH will be lowered or suppressed if there is sufficient T4 detected in the blood. The truth of it is i don't think they want to learn.
I am so glad to hear you feel fantastic. Wouldn't it be wonderful if they abolished the TSH test altogether or at least gave it less importance. Surely the frees are what matters. I am very new to this but once explained it's all fairly obvious i would have thought.
Anyway you take care and thank you again for your help and advice.
This may sound dramatic - the day that I decided to stop relying on doctors for my health was the first day that I began my health journey and have never looked back!
I'm glad you took control of your own health and that it's worked out so well for you. I'll probably have to do the same but without the support i get from this site, I don't think I could do it. I feel so fortunate to have found all you lovely people. Thank you so much. I'm so grateful.
My TSH is always suppressed on any medication, be it T3 only, T4 only or NDT, and any amount of it. I think my pituitary tried so hard for so long that as soon as the meds turn up, it just says “OK, I’ll let these guys handle it.” I have never found a Doctor of any sort who understands this.
That's really interesting to know. You obviously have a very enterprising pituitary that knows how to delegate!! Hope "the little guys" are doing a good job and that you feel well.
Hi Caroline888 am having similar issues re dosage being decreased etc over the last 9 months or so (by the way our results are very similar but I've been on 100mcg Levo since Sept '17) but i have managed to get a slight temporary increase back to my original dosage of 125mcg, but only on alternate days, with retest in 8 weeks.
GP listened well and read relevant part of Dr Toft's Pulse article . But she made it very clear that if my TSH goes up then Levo will be reduced again. Felt like a naughty little girl who was pushing for extra sweeties!
I'm sorry you're having these problems with your doctor. They seem all too common unfortunately. It feels just too stressful to be having to fight when your body is at a low ebb (not to mention battling with the brain fog etc!).
Anyhow keep us posted about your progress. I gain such a lot from reading about others in the same boat. Good luck.
Sorry to hear you are going through the same thing! As you say, it almost seems to be par for the course. A doctor who knows what he's talking about when it comes to the thyroid seems to be a rare thing. Your doctor sounds better than most. Certainly better than mine who dismissed Dr. Toft's article out of hand. As tho he himself were the expert!!😤 i despair.
Hope your blood test in 8 weeks produces results which give the dose you need and not what the doctor says you can have. It's ridiculous really. Fingers crossed anyway that we'll all be well in the end.I
Thanks Caroline888 . Yes I felt encouraged that my doc listened and suggested raising Levo every other day. Just keeping my fingers crossed that she stay that way. She seemed very adamant that if tsh strayed too low after 8 weeks then it was curtains re keeping that regime! It was the strength of her words and voice that left me in no doubt that there'd be a fight! But that's all in the future - so no use worrying!
That's interesting, I see he's been mentioned before in the Forum as somewhat the successor to Dr Skinner (in his open-minded, scientific approach to thyroid studies).
Has he published any scientific papers about correct dosage, reference ranges/what is dangerous or ok in TSH, T4, T3, etc. that you are aware of that we could take to our GPs to make our case? Thanks!
What would happen if you just 'forgot' to make an appointment to see the doctor? You said they are really busy. Would they carry on giving you repeat prescriptions as normal?
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My last test shows very suppressed tsh.
I Would Like Some Advice Please? Re: Blood Test After Levo Reduction.
Re test after reduction in levothyroxine
