Where do I go from here my endo won't treat me if I want to pursue a supressed TSH?

Where do I go from here my endo won't treat me if I want to pursue a supressed TSH?

I've been away from the sight for a while had computer problems but thankyou to those who replied to me last time. About a year ago i started taking 5mcg of T3 twice a day with my 100mcg of thyroxine and started feeling a bit better. I went back to my Endo to find out he had had a heart attack and was replaced by another locum who promptly stated that T3 wasn't something that the NHS liked prescribing, I insisted she upped my dose which she reluctantly did. The letter arrived regarding my blood results full of miss-quotes and incorrect information and almost saying my symptoms were in my head. With an almost throwaway comment at the end of the letter she said my Vit D was under range at 12 (50 is the recommended) I was at this point on 10mcg T3 twice a day and 100mcg levo and started losing weight and feeling fantastic. Stopped falling asleep all the time and actually got my mojo back, with the support of my nutritionist my attempts at dieting also became easy, my willpower had returned as had my sense of selfworth. I lost 2 stone in about 4 months and everyone saw a change in me. I went back for my 6 month review to be met by yet another endo. She was pleased with my progress but said my TSH was too low because it was supressed and subsequently slashed my levo down to 75mcg for 4 days and 100 for 3days. Over the next three months everything started going in reverse. I found an article on Thyroid UK which stated that being supressed is sometimes what is needed to feel well and unlike some research questioned if it actually caused osteoperosis. Fatigue and the ensuing inactivity were the reasons why you would be more likely to develop weak bones. I sent this to the endo before my next revue along with the latest blood results my TSH was now up to 0.78 from 0.09 (0.3-5.5), T4 down to 10.8 from 14.5 (12-22.0) and T3 down 4.5 from 5.9 (3.1-6.8). On my next visit she wasn't impressed with what I had sent her and refuted the article and basically said that if I wanted to pursue this she would no longer treat me. My health has gone down hill, I've had a kidney infection, shingles, one of my liver function tests has become abnormal again after going normal and I'm putting on weight. I don't know what to do, any advice?

Thanks

62 Replies

oldestnewest
  • Tinatoxoph,

    1. If you stick with your endo's regime you'll feel ill because she's more concerned about controlling your TSH than your symptoms.

    2. Find a new endo who isn't obsessed with TSH and will prescribe the dose you need to relieve your symptoms.

    3. Supplement the dose prescribed by self-medicating to make up the dose to what you need to feel well and then you can fire your endo.

    Have you sorted out your vitD deficiency?

  • I think she should get a bone density scan and a holter monitor for heart. Set a baseline. That would be the intelligent thing for the endo to do. (Then do another bone density scan in 12 months). Why speculate? Get evidence. If it exists. (at her prefered dose, of course). Get the GP to order it up. If everything is great, get another endo and move forward. This sort of thing needs to be done scientifically.

    How much vitamin D3 is being taken now?

    I've been asking people who take vitamin D3 how much do they take. 4,000 IU per day.

  • Hi gabkad,

    Thanks for your reply! Good idea, I need to have a good chat with my doctor. My nutritionist seems to be the one who has the right view in all this, she says the trouble is that endo's come out of medical school with general guidlines and a one size fits all ethos which clearly isn't correct.

    on the subject of vit D I was put on a 2week course of 20,000 IU per day then 500 for 6 months. They didn't give me forms for more tests until I prompted them. My results went up to 38 and was given 1 wks course of 20,000 IU again then 500. She forgot to send a letter to my doctor to repeat my prescription of the 500 so when it ran out I presumed that was it, I only discovered this when I went to a follow up with the endo. I should have been still taking 500 continously. I had bloods done again and they came in at 42 still below range so she has put me on 500 lifelong. She did test me for parathyroid hormone which came back at 35 ng/L (15.0-65) and coeliac which came back negative I presume to see if there was a reason why I wasn't absorbing Vit D very well.

    I was also tested for

    Serum Ferritin - 86 ug/L (15-150) I have read that if your hypo this should be above 90 and more towards the top end.

    Serum B12 - 513 ng/L (191.0-663.0) Minimum should be 500 but upper end is better

    Serum Folate - 9.1 ug/L (3.8-16) Again I have read that if you are hypo this should be over 12

    I put this to the endo and she basically ignored me!

    Thanks

  • Tina, you can buy vitD3 over the counter. I suspect yours is taking so long to improve is because you didn't have a loading dose and the maintenance dose is too low. Try 5,000iu for 6 weeks then 5,000iu alternate days and retest in Feb/March.

    My vitD was <10 and I was prescribed 40,000iu daily x 7 followed by 2,000iu daily for 8 weeks and when I retested vitD was >100. I currently supplement 5,000iu daily and will have a vitD test in Dec.

    Ferritin is optimal 70-90 so yours is fine. I don't think folate is a problem either.

  • Hi Clutter I originally was given Fultium D3 800ic capsules by my GP and started on two per day, then lowered to one per day. My Vit D went from 23 to 78, but I see that you take a lot higher dosage almost 5 times more. Should I take more?

  • Marmaris, I'd certainly take 2 capsules Oct-April because ultraviolet light is too low to stimulate vitD.

  • Many thanks I will do as I know that the winter months are the hardest for obtaining Vit D.

  • Hi Clutter,

    Thanks for replying. My problem is that without the endo I won't get T3. Finding endo's that will prescribe it where I live is going to be difficult I could do with knowing if there is a sympathetic sensible endo in the North East Midlands/ South Yorkshire area.

    My vit D is ongoing I still don't think it's sorted yet.

    Thanks

  • The vitamin D situation needs to be totally ongoing. I.e. you need to take a larger dose either every day or once per week. For example minimum 2,000 IU every day or 20,000 IU once per week. As soon as you stop taking or reduce the dose too far, your blood levels will go down. Unless you spend time at a tanning salon. Vitamin D3 is probably cheaper.

  • Doctors seem to prescribe so much lower

  • I watched a lecture given by a neurologist. She said that testing indicated that a person whose vitamin D3 level at the end of the summer is excellent will have low vitamin D3 blood levels by February if they are only taking 1000 IU per day.. .. seasonal affective disorder anyone?

    In order to maintain a good blood level from whatever is achieved through summer sun, it requires 2,000 IU.

    I don't bother with daily dosing. I just take 20,000 IU on Sunday after I eat.

  • HI All I am finding the thread about Vit D really interesting but m becoming concerned at the V. high doses which are being recommended. As someone who has had Vitamin D toxicity ... ie too much Vit D then please can I recommend you read this site info....

    vitamindcouncil.org/about-v...

    and do please be careful. We have enough problems without overdoing it and a Vit D blood test every 3 months is not a big ask from the Doc. In a nut shell it is a fat soluble vitamin which can store in the liver and cause problems with your calcium levels.

  • How did you do that?

    Dr. Paul O'Connor at St. Michael's Hospital, Toronto, Multiple Sclerosis clinic put his patients on 40,000 to 55,000 IU per day for months and months as part of an experiment to see if it had any beneficial effect on MS. It didn't. But the patients had no adverse response either. I told him maybe try Vitamin K2 instead. AT least that vitamin is needed for myelination. As is vitamin B12. MS patients are neglected from their basic requirements and pumped full of expensive interferons to the tune of $55,000 per year. And they don't benefit much except feel sick and suicidal. But there's big money in interferon therapy.

  • Cod liver oil contains way way way more vitamin A than vitamin D3. Anyone trying to get their vitamin D3 from this source will OD on vitamin A.

    Like the explorers who died from eating polar bear liver......

    Which, I'm thinking back to Dr. Grimes video lecture on Vitamin D3.... one of his south Asian patients had excellent vitamin D blood levels from eating imported fish from Bangladesh 3 times every day..... She was not well from something or other but.... hm... if she was getting that much vitamin D from fish she must have been eating the whole fish... that means her vitamin A level may have been too high. Except he wasn't testing for vitamin A.

  • Cazoom, it says in there that toxicity is rare on <8,000iu daily. How much were you taking?

  • Hi gabkad, I will probably pursue the Vit D with my GP rather than my Endo. I don't think the dose I have been put on is enough to sustain anywhere near the right levels. My nutritionist is very supportive and full of advice which is a big bonus.

  • Tina, email louise.warvill@thyroiduk.org.uk for a list of recommended endos in your area.

  • thanks, Will do!

  • Self medicating means, finding means to buy the meds you need, without a prescription, online. You can get back to where you were, before your doctor made you ill again. Finding a decent doctor is nearly impossible. They are too worried about getting in some sort of trouble. Most use labs to dose. Imagine being done with all that and all the testing too.

  • My endo tried to reduce my meds based on blood tests and suppressed TSH, I asked him to spell out the risks, what percentage of a chance was there of getting osteoporosis or heart trouble? He could not give me an answer so I told him I would rather have 5 years of decent quality of life than 15 of daily agony!! He now backs down over any variations in meds!!

  • I agree my tsh has been suppressed forever, even while taking just T4 alone. I have just had my third bone scan done the third in the last 8 years or so and bones still off the rector scale of being good. Scaremongering comes to mind!

  • Forgot to add that I now take T3 also and no different.

  • Hi marmaris,

    Was your Endo happy with you being supressed and was doing the bone scan a precautionary measure or did you have to dig your heels in and make demands. I already have a few problems in the vertibrae of my back and have foraminal stenosis. The back specialist said at the time that osteoperosis and bone thinning can be part of being hypo not a consequence of being supressed. I had said this to the second Endo but i might as well have been speaking Cling-on.

  • Hello tinatoxoph that was the third one that I have had. I think that two of them were actually requested by my Gynacologist. I have more or less been suppressed even when just taking T4 they get a bit freaked out but keep a close eye on it. Anyone can request a bone scan. I do not see how they can refuse it.

  • Thanks, It's certainly worth a try!

  • I was refused a bone scan as I am not in an 'at risk' group!!

  • So how do they establish the "at risk" group unless they do scans. Whats the criteria?

  • You have to be a drinker,smoker and have a family history of early - onset osteoporosis from what I can gather!!

  • So if you've abused your body they take care of you but if you have an uncurable debilitating illness that can be helped by medication if carefully monitored they don't give a X#%T. Sounds about right

  • Tina, early menopause <45, familial history of osteoporosis and some other things I can't recall.

  • Hi Glynisrose, Unfortunately whatever research or info I throw at her I think she will just tell me to sling my hook. That was the vibe I got in no uncertain terms. I think I need to find a sympathetic Endo then confront her or bin her off. I feel like you did I would rather feel well for a few years than crap for many, theres no quality of life!

  • She is obliged by her contract to read and discuss with you ANY information you take to her, maybe she needs reminding? I argue back to my endo, he wants me to lower meds and I say NO!! As the law and NHS ruling stands they cannot change or reduce your meds without your permission, (!that means if you say nothing you are agreeing!!)

    I was refused a bone scan as I am not in an 'at risk' group!!

  • So unless you know the patients charter inside and out or have had dealings that have made you become informed you may never know these things. I didn't know that they couldn't change or reduce my meds without my permission. Does that also mean that she can't refuse to treat me. You don't expect to be treated like this, the trouble is we treat them too much like Gods and they don't respect our opinions.

    I try and research thing and educate myself and take ownership of my life but within minutes you are made to feel very small and made to feel like you have no place to question them.

  • No,doesn't change anything else but you HAVE to stand your ground after all its your health, your GP or endo can go home and forget about it, you can't.

  • If I lowered my thyroid meds to please my gp I wouldn't be able to get out of bed! My Endo is sensible and pointed out that I am risking possible heart and bone problems ((which I am yet to see proof) and area fed a bone density scan for me every 3 years, so far my bones are great.

    This is crazy for an Endo to cause you to be unwell! I would write to him so this is on your notes.

    When you take t3 it suppresses your tsh. In my view your free t4 is way too low. It needs to be 22!

    Vitamin D is so important so do make sure you take D3. My go has stopped prescribing my D3 as he said the nhs cannot afford it!

    I can let you know the name of endo I see if u message me.

    Sue

    thyroiduk.org

  • This is a link and refer to the second question/answer.

    web.archive.org/web/2010103...

    It would be great if they followed the answer to the first question.

  • Hi if you saw and endo in the nhS they are not allowed by hospital protocol. Same Endos often do privately as their own rules then.Ask their secretary before asking for a referral.

    Jackie

  • My endo takes the view that I have been told the risks, that I am well informed enough to make my own decision and if my quality of life is improved to such an extent that I am willing to accept the risks then that is my choice and he will go along with it.

    Surely it is possible to sign some sort of disclaimer which absolves the doctor of responsibility if you choose to go against his advice? I know I had to sign something like this when I refused a blood transfusion once.

  • I wish I had the answer to this one. Throughout my interactions with the NHS, when I was on T3 only, and now on T4, I have not found a single GP, endo consultant or registrar who is prepared to look behind the TSH. They were trying to treat me by TSH when I was on T3 only and now they want me on a dose of levo that does not suppress my TSH. Unfortunately anything above 50mcg suppresses my TSH and I need at least 125mcg to be well. I did have a referral to Dr Skinner, but not in time, so I have been searching for a consultant for the past year without success.

  • I wish I had the answer to this as its what I am up against at the moment. My endo (and I have seen 3 at my hospital) is quite happy to leave me with a tsh of 2.53 and a T3 of 4.2 on a dose on 30mcg T3 only . I was told on my last visit that 4.2 t3 is more than sufficient for anybody! All 3 endos have all said that they will not allow my tsh to be suppressed as it will cause bone and heart problems. To be quite honest the prospect of this has frightened me. Its very difficult arguing with them when you are on their home turf.

    Meanwhile I live a half life. Tired, ache all over and very depressed. I managed to persuade them to increase my dose to 35 mcg, but it has not made any difference to my symptoms. I have decided that if they do not increase further then i will accept their dose of 35 and self medicate the rest. This frightens me as I do not want either bone or heart probs to add to the list. Who do you believe???

    I go for my next blood test next week and have a hospital appt in Nov. I know it will be another fight when they see the results.

  • Lizzie, you do your own research. I have yet to read anything that convinces me that there is a risk. There is far more of a risk to bones and heart in being hypo.

    My ex-doctor wanted to reduce my dose when my TSH was 0.45! He was all trembly and worried: Ooooo we've gone too far!!! I told him point blank that I was not going to reduce my dose, so he said ok, on your head be it, and increased my dose. lol

    When your doctors can give you links or book references of studies that have been done ON HUMANS, not on rats, that prove their hypothoses, then you should believe them. But not before. Unless they can do this, it's just a myth and hear-say. Just tell them it's not 'evidence-based'. lol They love that phrase.

    Hugs, Grey

  • Lizzie, your heart NEEDS T3. My heart struggled to beat when I was under medicated. Do you sometimes feel more of a pounding sensation during sleep? It is proven by an ECG if your doctor will order one. Find out. There will be a lag in the R wave. I don't know if I have bookmarked the article but if you would like, I will try a search for it.

  • Hi Heloise thanks for the reply. I get a feeling like my heart misses a beat and takes a few beats to get back into its stride. It feels like it is fluttering and then it does a big thump of a beat and is back to normal. Can feel a bit frightening waiting for it to get back to a normal pattern . Its done this for many years. Does it once or twice a day.

    Would be interesting to read the article, thank you.

  • I'll see if I can locate it Lizzie. Interesting to know if your Endo had taken some T3, he/she may have avoided a heart attack. (Maybe that's going too far.)

    If you were young and healthy, some of those odd things could actually be healthy responses according to a doctor I respected and who had his own website.

  • circ.ahajournals.org/conten...

    It may be in this but I haven't taken the time to reread it.

    Even skimming the paragraphs you can see the importance of enough thyroid hormone to keep your heart healthy. And even the cardiac risk of fatality when you don't.

  • This isn't the one I'm looking for but I'm thinking it may apply to your Endo after all. It's short.

    hindawi.com/journals/jtr/20...

  • Thank you. Will settle down with a cuppa and have a read.

  • This is an excerpt from Dr Lowe's website:-

    Dr. Lowe: If by "thyroid specialist," you’re referring to an endocrinologist, then no, I don’t know of one in your area I would refer you to. Over the years, I’ve spoken with many endocrinologists in Canada, France, and all across the United States. Based on those communications, I know of only of a few I could in good conscience refer you to. Unfortunately, none of those few are in your geographic area.

    If you insist on being treated by an endocrinologist, I wish you luck; you’ll need it. I believe that a few—precious few—are cordial human beings and excellent clinicians who work collaboratively with their patients. In my experience, however, most are arrogant, rude, and dictatorial. Worse, I’m convinced that most are thoroughly ignorant of how to help hypothyroid patients overcome their symptoms and recover their health. You may eventually find one who’ll interact well with you and treat you properly. But to find that one, you may have to sort through many who’ll sustain your symptoms and insult you in the process.

    The problem is that, for all practical purposes, the modern endocrinology specialty is a marketing wing of various corporations that lavish it with financial inducements. The inducements buy the specialty’s loyalty. As a result, what you as a patient can get from most members of the specialty is strictly what the corporations market and profit from—even if this leaves you ill and debilitated.

  • Coming from a doctor thats quite scathing and not something to fill me with confidence, looks like I could be in for a long hard battle. Bring it on!

  • Could I have the link this came from please, shaws.

  • This is it and go to the date December 18, 2003 also the other questions/answers are useful. An excerpt from another question on same page:

    Dr. Lowe: It was kind of you to take the time to write and describe your experience with Synthroid and the doctors who’ve doggedly restricted you to it. Your experience—like that of tens of thousands of patients—confirms the opinion of Professor Linus Pauling: "Among all professionals, it’s physicians who do the least bit of thinking for themselves."

    Conventional doctors do no thinking at all for themselves when it comes to thyroid hormone therapy. They’ve long left that chore up to two entities: the marketing departments of corporations (currently Abbot Laboratories) that have promoted sales of Synthroid, and the endocrinology specialty—whose endorsements of Synthroid boil down to parroting of marketing hype from the corporations' marketing departments.

    Your attempts to educate your current doctor are most likely a waste of your time. Keep in mind an old aphorism: Exposing a closed mind to facts is like shining light on the iris of the eye—it just closes more tightly. In my experience, facts are useless in rescuing such a doctor from his state of non compos mentis. I’ve seen only one thing bring such a doctor around: His mother, his wife, or he himself becomes hypothyroid, and despite using Synthroid, they or he continues to suffer from hypothyroid symptoms. Whereas the suffering of his Synthroid-using patients didn’t change his mind, his personal anguish does.

    web.archive.org/web/2010103...

  • P.S links within the main one most probably be accessible as it's an archived site now.

  • Thank you, shaws. :)

  • If you e mail Louise Warvil at Thyroid UK she will send a list of Endos & GP's. you will see there is an Endo in Nottingham. Private, you need a referral letter from your GP. Worth every penny. Message me if you want details.

  • I would call PALS at the hospital where you saw the Endo and explain about having to see a different one and that basically they are making you unwell, and how much better you felt on the original dose. I complained about my first one at the hospital and they arranged a second opinion for me with another in the same hospital. Say you want to pursue a formal complaint if they don't suggest a second opinion, that might just get them suggest it. Not sure which hospital you are at but at mine PALS were really understanding and helpful.

    It's crazy the amount of Endo's and GP's who all have a different view of supressed TSH - I basically got referred to an Endo because I asked for my dose to be put back up after the new GP dropped it due to a supressed TSH. I later saw another GP in the same practice who said he wouldn't have referred me as he didn't have a problem with a supressed TSH and sometimes it's needed.

  • I have friends who work at the hospital and they have mentioned PALS. Trouble is don't they all close ranks especially when the person in question is the head of department?

  • In some areas PALS work for complaints within the health service as well as from patients so I suppose their loyalties will be divided but I found them to be helpful. It wasn't a long drawn out process in my case, I just phoned them and they called back a few days later offering me a second opinion. I didn't have to fill any paperwork in or anything and because I said I wanted to see someone straight away I got an appointment within another week. It's worth a shot, nothing lost in giving it a try and you might get lucky.

    Good luck, hope things get sorted for you.

  • So where are all the people that were on high doses on NDT up until the 80s before they invented synthetic hormones and the TSH test? Surely it wouldn't be too difficult to check their bone density and hearts against a group of non hypo patients and actually see if this is true or not?

  • My thoughts exactly!

  • I am having similar problems with my endo. I found this article today google suppressed TSH society for endocrinology. This states patients who have slightly low TSH (0.04-0.4mU/l) did not have an increased risk of contracting any of these conditions - i.e heart disease, abnormal heartbeat and bone fractures. I guess they need to do more research before it is believed that is fact by the NHS. I can't increase my Armour even though my T3 is only 4.8 (4-8.3) as my TSH is 0.11. I am so much better than I have been for years but not quite there yet. Considering self medicating!!

  • Thanks i'll have a look at this, more amo to gather!

  • Hi, I really feel for you. I was on the same dose as you 100mcg thyroxine and 10 mcg liothronine, and also under an endo. I also have low vit D which was dangerously low. Luckilly, though at the time of diagnosis I was prescribed calceos, and as they are on repeat, I am still on them - NHS prescription. Also, my current endo is NHS (am not happy with so have a referral to a better one in England - ongoing. I live in Wales). My current endo agreed to up my liothyronine to 20mcg on the condition that I lowered my thyroxine from 100mcg to 75mcg. Tried this and the same as you, my symptoms came back. On top of this, I also had a bad kidney infection (March & April) and had the doctor out twice, almost admitted to hospital. I was living alone and literally crawling on hands and knees to get to the loo, as for one week out of the 6 that I had it, I couldn't leave bed. I know where you're coming from. I had kidney stones, one of which I ended up in A&E with 2 yrs ago and spent the night there, and the other they think passed with the infection as on latest CT scan (2 weeks ago), it showed that the kidney stone had completely gone. I was also going to a healer, so think that had a lot to do with it. Going back to your thyroxine etc, I will PM you with the website where I get mine. Both T4 and T3 can be ordered from there. With the liothyronine, when I took my NHS prescription to a Boots store, the pharmacist was shocked at how much it cost and said it was £2.00 per tablet. Not sure how that works, as it is much much cheaper on-line.

    Have a look at this site:-). Also, blood levels will need to be monitored though. Mine currently aren't as my GP practice are TSH types only, and wont even do a T3 test, even though am on liothyronine which is prescribed by endo! Ironic really. They trust the endo in lowering my thyroxine but wont do T3 test even though am prescribed it by endo. They don't care about symptoms.

    I get how you're feeling, will PM website:-)

You may also like...