Hello, I am looking for a little advice. I became very unwell 3 years ago and after developing a thyroid mass and was diagnosed with hyperthyroidism. I was under significant stress at the time and I believe this led to the mass and hyperthyroidism. As biopsy proved inconclusive so my thyroid was removed. I was medicated on 100mg levo for almost 1 year and became extremely ill and bed bound, Hair fell out, nails broke, skin rashes, extreme fatigue and brain fog, aching muscles and bones and massive weight gain. I just wanted to die. My Endo was no help and wanted to reduce my levo as blood test showed elevated T4 but I was only on 100mg and had hypo symptoms not hyper. He did not test T3 or anything else and refused just testing T4 AND tsh. Through this website I realised that I probably have conversation issues and needed T3. I started to take T3 and within a couple of weeks and started to feel much better. My Endo says this is just coincidence and wanted to put me back on levo as that he considers it safer. He keeps saying that it is dangerous to self medicate. I have repeatedly requested VIT D, magnesium, blood panel tests etc but he says its not necessary. I tried to get another Endo who was a specialist in Thyroid issues but she would not accept me on her list stating that she is not a thyroid specialist and there are no thyroid specialist where I live, just general Endocrinologists so I am stuck with the original Endo who keeps threatening to take me off his list if I keep self medicating . My problem is that today after numerous tests I have been diagnosed with Osteoporosis and it is very severe in my spine so much so that I have to go for Xrays this week as the Rheumatology consultant believes that I may already have hairline fractures in my spine which is causing the pain (I am only 54 years). She has written to my Endo as she says that high levels of thyroid hormone can causes severe Osteoporosis like I have. This will play right into his hands and he will never prescribe T3. She has also ordered a celiac profile which is pointless as I have been gluten free for 2 years because I suspected that gluten was an issue for me. I am also HLA B27 positive. She has suggested that I take Calcium, Vit D and Bisphosphonate straight away but I have read that Calcium can interfere with the body's ability to use thyroid hormones. I already have issues with conversation and gut issues. Does anyone else have Osteoporosis and has had a total thyroidectomy? Does anyone have any information on medication for Osteoporosis that will not interfere with thyroid meds? Does anyone know what my rights are to see a consultant who is an actual specialist in thyroid issues and could prescribe T3 or Armour or at least try to find out why I am not converting Levo?
Any help will be gratefully received.
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s-bailey
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For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
If/when also on T3, make sure to take last dose 8-12 hours prior to test
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Also email Dionne at Thyroid Uk for list of recommended thyroid specialists
Many thanks SlowDragon. Yes I am in UK, I live in Northern Ireland. I could pay private for tests but the problem is that when I get the results it will not mean anything to my Endo and I cannot get another Endo as I have tried.
I have osteoporosis and partial thyroidectomy. No family history or other risk factors. Apparently there is no conclusive evidence proving that thyroid medication causes osteoporosis. It is known that hyperthyroidism can reduce bone density. There may be several factors at play beside overproduction of thyroid hormone, antibodies may be a factor for example.
As Slowdragon says, get your vitamin levels tested and then optimise them.
It seems sensible to be cautious about thyroid hormone and stay within reference ranges when coping with osteoporosis.
You can take calcium and vitamin D by separating it by 4 hours from thyroid meds. Bisphosphonates should not interfere with thyroid meds if separated by 2 hours. My own opinion is that Osteoporosis can cause bone and joint pain so you may find that as your osteoporosis is treated, you will begin to feel less pain and discomfort. The right kind of exercise is important but you need advice if osteoporosis is severe.
You should get parathyroid hormone checked out too.
If you have absorption issues you need to sort it out. Being bed bound can contribute to osteoporosis as you need to keep active for good bone health. It sounds like you have multiple factors affecting your health and need a multi stranded approach to tackle the various facets.
Many thanks Nanaedake. My T3 is a little high but I only take 25mg in morning and 25 mg in evening and I do not have a thyroid at all. I still have some mild hypo symptoms and cant understand why blood tests shows T3 a little on high side. Is it possible that my body is struggling to get the T3 to where it can be used? If that is the case what can I do about it. I am reluctant to reduce the amount otherwise I will be back in my bed for months on end.
You need to get your vitamin levels tested because if you optimise them your remaining symptoms may disappear. it can take up to 6 months for Better vitamin levels to really make a difference. If it were me, personally I would keep all thyroid hormone within reference range but you need advice from other forum members about timings for T3 testing as I only take levothyroxine and don't know how best to test FT3 levels.
Hi bailey, you've had quite a ride, haven't you. It really is disgraceful...not much better in the U.S. I've read lately the SHBG levels can reveal whether FT3 is connecting with the cells otherwise taking your temperature first thing may be useful. Jon Barron writes a health column and states that progesterone can help in building bone. You definitely need a high level of vitamin D as well. Ray Peat is an authority as well.
Even if you have no thyroid you don't need an overabundance of thyroid hormone, you just need enough. Like others have said, you most likely want to take some levothyroxine alongside T3.
Your so right Nanaedake . I had TT and from my own experiences more is not necessarily better in fact it's just as bad as not having enough thyroid meds . It's important to journal our symptoms they are our cellular responses to our thyroid meds and well-being . BW is a snap shot of the moment BW was done . They have their values too . Especially FT3 FT4 . TSH is very valuable even though they are our pituitary markers but if low it signals that one is in hypo state .
Levothyroxine alongside T3 is *Great* especially for those of us that don't convert T4 to T3 .
Vitamin "D" /K2 , Calcium , Magnesium , minerals are very important for our bones . Resistance exercises walking weight bearing is very helpful . Adrenal/ Cortisol/DHEA support is very important . It helps with our hormones . Some use topical Progesterone .
Hi jgelliss, I don't have them as I don't get a printout and I am due another test this week but from what I can remember TSH so low hardly any value, T4 low hardly any value and T3 over range but not significantly. My GP was concerned because TSH and T4 so low but given that I don't have a thyroid and don't take T4 I was not worried. I read somewhere that if T3 is optimal then TSH would be low. I will post my next results on here when I get them
s-baily . I can tell that your Dr does not understand thyroid dosing . Anyone on T3 will have low TSH if any . It's that simple . You would be much happier and be less stressed out if you would switch Dr's .
I have severe osteoporosis and am on T4 med and having similar symptoms as you are. I am on 75 mcg 4x/week and 88 mcg 3x/week. Endo does not believe in testing for FT3 . She said it is like putting one of your hairs on your bathroom scale. My othere numbers are "in range" but not the range I have read are the correct ranges. I take tums for calcium and was on Evista as could not tolerate the other osteo drugs but since it can cause blood clots and stroke I have not been taking it as of late. If you take calcium citrate make sure you take it at least 4 hours apart from your T4 med. I have trouble swallowing the calcium pills as i have severe scoliosis and a bend in my esophagus and trachea at the collarbone area. I believe this goes along with the osteoporosis. My endo still tests FT4 but says eventually will only test TSH. I am not happy with this but had a 2nd opinion and same thing. Frustrating I know. My endo is against T3 meds also.
Gosh how do these people even call themselves endos? Can you get the list and find another one with some insight into thyroid probs? Poor s Bailey and you have my sympathy. I’ve had about 4 endos. My current is the best so far. Although his assistant, who I sometimes see has a lot to learn and used to just rely on TSH until I complained.
Hi Ziburu, I have the list from Thyroid UK but there aren't any Endos on the list who practice in Northern Ireland. My Doctor wrote to another Endo here who she believed was a specialist (after I insisted) but that Endo wrote back saying she is not a specialist just a general Endo and there are no thyroid specialist here.
The fact that you now don't have a thyroid doesn't negate Slow Dragon's suggestions but only strengthens the need. Your thyroid is the " conductor of your bodily orchestra " - it is a major gland and if living without a thyroid we need to have to make up for what we have lost.
If hypo or hyper, your body isn't able to metabolise well and you may have vitamin and mineral deficiencies that again, can cause knock on problems and reduce conversion.
As a point of reference a fully functioning thyroid would be giving you, on a daily drip : approximately 100 T4 and 10 T3. It seems to me only logical that both these vital hormones should be on your prescription.
I am without a thyroid having had RAI in 2005.
I too have become housebound - but after two years, reading and learning from this site I'm now self treating with Natural Desiccated Thyroid and getting my life back.
Having a doctor who believes only in a TSH blood test and Levothyroxine,
I decided to self medicate with Natural Desiccated Thyroid.
It's a slow build, my vitamins and minerals needing to be optimal in the first instance, along with adrenal support I needed to supplement first, before the NDT.
It is the right decision for me, it's a massive learning curve, but I do believe we need to take control when the medics around us don't have the answers, or the time, or the knowledge to offer anything constructive.
please be aware that the Endo shouldn't remove your from his list simply because you are self medicating. The Geeneral Medical Council say so in their guidance "Ending your professional relationship":
In Good medical practice we say (to doctors):
You should end a professional relationship with a patient only when the breakdown of trust between you and the patient means you cannot provide good clinical care to the patient.
In this guidance, we explain how doctors can put this principle into practice. Serious or persistent failure to follow this guidance will put your registration at risk.
Things to consider
In rare circumstances, the trust between you and a patient may break down, for example, if the patient has:
>been violent, threatening or abusive to you or a colleague
>stolen from you or the premises
>persistently acted inconsiderately or unreasonably
>made a sexual advance to you.
You should not end a professional relationship with a patient solely because of a complaint the patient has made about you or your team, or because of the resource implications of the patient’s care or treatment.
Before you end the relationship
Before you end a professional relationship with a patient you should:
warn the patient that you are considering ending the relationship
do what you can to restore the professional relationship
explore alternatives to ending the professional relationship
discuss the situation with an experienced colleague or your employer or contracting body
and you must be satisfied that your reason for wanting to end the relationship is fair and does not discriminate against the patient (see paragraph 59 of Good medical practice)
From what you have typed, I personally don't think that the Endo is competent. You have presented him with evidence that T3 works for you. He should accept that because he has to work with you as a patient. The GMC says so in Consent Patients and doctors working together:
If patients have capacity to make decisions for themselves, a basic model applies:
The doctor and patient make an assessment of the patient’s condition, taking into account the patient’s medical history, views, experience and knowledge.
The doctor uses specialist knowledge and experience and clinical judgement, and the patient’s views and understanding of their condition, to identify which investigations or treatments are likely to result in overall benefit for the patient. The doctor explains the options to the patient, setting out the potential benefits, risks, burdens and side effects of each option, including the option to have no treatment. The doctor may recommend a particular option which they believe to be best for the patient, but they must not put pressure on the patient to accept their advice.
The patient weighs up the potential benefits, risks and burdens of the various options as well as any non-clinical issues that are relevant to them. The patient decides whether to accept any of the options and, if so, which one. They also have the right to accept or refuse an option for a reason that may seem irrational to the doctor, or for no reason at all.
If the patient asks for a treatment that the doctor considers would not be of overall benefit to them, the doctor should discuss the issues with the patient and explore the reasons for their request. If, after discussion, the doctor still considers that the treatment would not be of overall benefit to the patient, they do not have to provide the treatment. But they should explain their reasons to the patient, and explain any other options that are available, including the option to seek a second opinion.
this approach was made legal by the case of Montgomery v Lanarkshire Health Board 2015.
it is likely that your Osteoporosis may possibly be caused by other factors, not solely by an excess of thyroid hormones, but I am not a doctor and I may be wrong.
However, according to the GMC and the courts, the decision of which treatment course is for you to take not the doctor. He is not bound to give it to you if he thinks it is not good for you. He should listen to you and your evidence. But he should "let" you have a second opinion.
Thank you so much for this information, it is really helpful and I think I will print it out and quote to my Endo the next time he suggests removing me from his list.
A Dr that refuses to work with you is *Not* a Dr you want on board to help you with anything . I hope you find a Dr that understands how to treat you well and is not turned off by you wanting to be involved .
That's easier said than done. Both my Endo and my GP express dissatisfaction when I try to challenge their thinking or indeed try to make my own decisions.
I would suggest you move on to a new Endo/Dr . You need a Dr/Endo that is not threatened /offended by you wanting to be involved . In my experiences Dr's that felt threatened and upset with my wanting to be involved with my well -being and where threatened with my questions where Dr's that didn't know much or suffered from low self a stem . I was not interested in neither . Look for a Dr that *Gets It* and is *Out Of The Box* that is interested in treating you the very *Best* they can . I always respected Dr's that didn't know but took the time to consult and do fact finding .
Great . Take her up on her offer . It's obvious that she can't help you and thru her hands up . I would run not walk from just such a Dr . I think you should too .
I hope you find a great Dr that can help you and involves you in your care too .
Just try to get through to a doctor with all and any information. My GP told me I was coming in too often with different complaints and could lose his license when I was in the throes of hyperthyroidism from severe Graves...never even did a TSH test. I only found out because i had an oncologist followup who automatically tests TSH every year along with other blood tests and called me up and said get to your endo immediately or you are going to have a heart attack. Do you think the GP ever took responsibility for putting me off?? Of coaurse not, plus I was afraid to call up when my legs swelled up to 3x the size and blood spots were popping out all over and I got cellulitis. I went to an urgent care center then instead of bothering my GP. Hard to find a good doc who will actually listen as we as patients are supposed to know nothing and accept whatever they tell us. Let me know if I am overthinking this.
If I ordered my own FT3 test what would I do with the results? I just do not know what to do at this point.
We should not have to put up with bad behaviour from doctors. The GMC are clear in how they expect a doctor to behave and the courts have backed this up.The NHS and the GMC expect us to give feedback if we feel that a doctor has not come up to the standard expected.
The Code of Practice and the decision in the courts are there for a reason. They are there to tell us what is the minimum standard for a doctor.
The Supreme Court said in Montgomery v Lanarkshire Health Board 2015:
"Patients are now widely regarded as persons holding rights, rather than as the passive recipients of the care of the medical profession"
and
" it has become far easier, and far more common, for members of the public to obtain information about symptoms, investigations, treatment options, risks and side-effects via such media as the internet (where, although the information available is of variable quality, reliable sources of information can readily be found), patient support groups, and leaflets issued by healthcare institutions".
and
"The idea that patients were medically uninformed and incapable of understanding medical matters was always a questionable generalisation...To make it the default assumption on which the law is to be based is now manifestly untenable."
and
"The social and legal developments which we have mentioned point away from a model of the relationship between the doctor and the patient based upon medical paternalism. They also point away from a model based upon a view of the patient as being entirely dependent on information provided by the doctor. What they point towards is an approach to the law which, instead of treating patients as placing themselves in the hands of their doctors (and then being prone to sue their doctors in the event of a disappointing outcome), treats them so far as possible as adults who are capable of understanding that medical treatment is uncertain of success and may involve risks, accepting responsibility for the taking of risks affecting their own lives, and living with the consequences of their choices".
It really is up to us as patients to challenge their behaviour as we are the ones who experience it. I know from my own experience how daunting this is for someone who suffers hypothyroidism but i did challenge my doctors and after a struggle I am in better health.
I am using my experience in applying the guidance and the law to doctors to help others do the same, giving them confidence the poor practice can be challenged and the information to help them do that.
Yes I agree that when you are ill it's so difficult to challenge. When I was bed bound it was difficult to string two sentences together let alone challenge anything
I think a dose of reality is needed here. Official figures for the UK give an incidence of about 540000 per year of newly diagnosed osteoporosis. For thyroid dysfunction in women about 90-100000 per year. So making the ridiculous proposal that ALL women with dysfunction will get osteoporosis, AND even more ridiculous that if they were always included in the OP group, then OP by nonthyroidal causes outweighs thyroidal causes by 6/1. But this is silly, because only a minority of patients on T4 go on to get osteoporosis. So we can confidently say that the vast majority of OP incidence is not due to thyroid dysfunction. Accordingly, anyone with both thyroid dysfunction and OP cannot be confidently diagnosed as if the OP was due to the dysfunction when it is much more likely to come from other causes.
Diogenes it's so simple to put blame on thyroid /meds when there are so many other factors that factors in too . Genetics , life style , nutrients , hormones etc. It's only those Dr's that don't know/understand that pick one cause and just stick with it instead of looking and examining the whole picture .
A big cause of osteoporosis in women over the age of 50 is menopause, i.e. loss of the hormone oestrogen. HRT can halt the progression, and even reverse it slowly when dosed correctly. Menopause also brings on hypothyroidism in many (me included) and so I would point to the loss of oestrogen as far more important than calcium.
So apart from any over or under medication. There are calcium glands in your neck that a surgeon has to be very careful not to damage when doing a thyroidectomy and a calcium test is usual to ensure that this is working ok. Vit D affects bones and most people are Vit D deficient particularly in winter in the UK. So both these should immediately be tested apart from anything else. It might of course, all be coincidence but without proper testing how would anyone know, usual treatment of treating symptoms and not causes. Assume you have had a bone density x-ray.
That's a very good point about damage of the parathyroids (the "calcium glands"). When I had a total thyroidectomy I was told that they only counted 3 parathyroids before they closed me up. He said that it was "either lost or still in there but they couldn't see it and in any case it didn't matter too much"! I guess if they are so blasé and sloppy about parathyroids it's no wonder that some thyroid patients get osteoporosis afterwards regardless of how high their T3 or how low their TSH.
Well at least my surgeon had the fortitude to let me know. I will publish my next bone scan results - but I think I am OK.
Hi annnsandell, yes I had a bone density scan. Consultant phoned me as soon as she had results because they were so severe. I had a calcium test a week after my total thyroidectomy and surgeon said fine. Calcium hasn't been tested since. Now I think about it, is a week after surgery long enough for calcium to be so depleted that it would show up in blood test? Should I ask for another test?
My doctor said something to me once that made me think - and I never got an answer. We were looking at my Calcium levels after a blood test and I was cheering because it was pretty good. He said, "Yes it's good so long as it isn't being leached out of your bones!" Yikes, I never thought of that! We never did get an answer to that statement.
The main places in the body that people would expect to find calcium is in the bones and teeth, and also being carried around in the bloodstream because it has been absorbed from the digestive system and is being transported to various places to do its various jobs around the body.
In someone who has a high calcium level in the blood this isn't always a good thing. That extra calcium is more likely to have come from the bones and teeth than from the diet. And this implies that the bones and teeth are getting weaker.
I have a family history of severe osteoporosis, and my calcium is always very close to the top of the range. This worries me, but I know that I won't get taken seriously until my calcium actually goes over the range. And I haven't pushed for further testing because I am not happy about the idea of taking the revolting drugs dished out for osteoporosis. My mother, for example, got extremely painful necrosis of the jaw and lost most of her teeth as a result of going on bisphosphonates. Drugs for osteoporosis don't result in people having better quality bone. They just end up making the bone they have last longer - and it is much more brittle than new bone.
I can't remember how long after my Thyroidectomy I had Calcium tests but they put me on Calcium straight away just in case. I remember my surgeon saying he thought he had managed to save all the calcium glands. It amazes me that T3 might be blamed without testing for obvious causes, even Vit D. Perhaps a lesson to us all to think about the possibilities of increasing our risks of Osteoporosis. The fact that you had an early menopause is probably the higher risk factor. Good luck, feel for you.
I'm sorry I can't remember, obviously until it was decided that I didn't need it after my next MRI etc. It was over 10 years and has really gone into a blur.
So, my thyroid was removed because of thyroid cancer. After radioactive iodine treatment I had an MRI scan to check that there were no "bits" of thyroid cells left in my body.
I feel so bad for you and totally understand your frustration with horrible Endo, I 've had my share too. I'm without a thyroid that has had disastrous effects on my health from huge weight gain and body pains that 2 yrs after thyroidectomy still plague me and of course my labs are always perfect...perfect joke.
Osteopenia and Osteoporosis diagnoises after thyroidectomy will almost always doom you with thyroid medication reduction since endos relate these conditions with your medication and I know this first hand after being diagnoised with mild osteopenia after bone scan last year. I did take 2 medication reductions but with mental and physical destruction after those 2 reductions ...I reject any decrease in meds. Currently on Armour Thyroid 2 grains.
Oh Canyouhearthat, I do feel for you...My bloods have never been right since thyroidectomy. When I was on Levo, T4 was high but only on 100mg and at that time I had gained massive weight and I understand dose is calculated by weight. My daughter who has a thyroid gland but is hypo is on 100mg and she is 2 stone lighter than me but her blood tests seem to be within range and she does not feel hypo any longer. I do think there must be something else at play here, its just finding out what that is and without a doctor to assist.
Initially I was put on 100mcg thyroxine, but I wasn't well on it and eventually saw an Endo, who put me on 75mcg thyroxine and 20mcg T3.If you have no thyroid at all then you really need to be given T4 and T3, as 20% of it comes directly from the thyroid gland. In Germany where my Sister lives they automatically give you T3 if you have it removed.In those days it wasn't so expensive, so there wasn't any problem getting it prescribed. I slowly improved on this, not wonderful, but able to function better and go to work.I was also starting the menopause at this time, so that probably complicated things.
I have been on that dose since, until two years ago when my Doctor asked me to trial just thyroxine due to the cost of T3.I agreed on the understanding that I could go back on it if I wasn't well.Needless to say it didn't work, and I had to go back on the T3.During this time I saw the Endo again (the first time since 20 years ago), who said I should have a bone density scan as my TSH is very supressed 0.01, and this could cause osteoporosis.The result was that I have osteopenia, which is the precurser to osteoporosis.
The thing is that both my Mum and Sister have osteoporisis, and theirs is nothing to do with thyroid hormones, so mine is not necessarily either as it can be genetic. I know several other people with it too and they don't take thyroid hormones. I don't take anything for it at the moment I just try and have lots of calcium rich foods rather than take supplements.I am due another scan this year, so hope it hasn't got worse, but unfortunately last year I broke my wrist, which may have been caused by it.
I agree there could be many other reasons why I have such severe osteoporosis but know that they Endo will focus on T3 as he simply doesn't want to prescribe it for me and doesn't believe its necessary. I went through the menopause very early in fact was perimenopausal in my late 30's. I have been experiencing severe stress for over 13 years now and think that could have something to with my current health.
A lot of excellent tips have already been given but to give you a bit more ammunition about T3 and conversion issues I would suggest you have a look at Paul Robinson's website and articles or his books like the recent Thyroid Patient's Manual and re osteoporosis you might find of interest dr John Sarno's Healing Back Pain book.
I'm so sorry to hear about all you are going through.
I have been told by an "Endocrinologist" I will end up with osteoporosis if I continue to take T3.
I have been in touch with the Osteoporosis Society who have advised me the following :
They do not list any thyroid medications (thyroxine or liothyronine) as one of the drugs that would cause osteoporosis.
Any thyroid medication taken in excess dosages will affect bones, just as any medication taken in excess will cause adverse side effects.
If you haven't already been in touch with them you could call them on tel 01761 471771 or email nurses@nose.uk. They have been very helpful when I called.
I have so much to say but not many answers.. I had the reverse happen - I had 3 parathyroid glands taken out, and I think they damaged my thyroid. That is getting better thanks to Armour (from GP) and helps from this board and the internet, but now endo says I have osteoporosis and wants me to go on "treatment" which I'm not going to do. I think I've not been absorbing things either.
Anyway, endos are about useless, which is a shame since the endocrine system is so complicated and often circular, but they only seem to focus on 1 or 2 lab tests and H or L and what they were taught 20 years ago, and don't look into the why of something is happening.
Someone in the osteoporosis forum recommended the book which I just started and it's great at explaining the why of osteoporosis, and what you can do about it: Your Bones by Lara Pizzorno, get the updated version.
I would call your local pharmacies and ask which doctors prescribe anything other than levo. I don't know if it works that way in Ireland though. But you may get more help from an open-minded GP vs. an endo.
I wish you luck, sounds like you are on the right track.
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