Consultant wants me off ALL thyroid medication! - Thyroid UK

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Consultant wants me off ALL thyroid medication!

spacestar profile image
17 Replies

The consultant treating me for osteoporosis has told my Endocrinologist that I should cut down then stop off All my Thyroid medication!!

The osteoporosis Consultant says being on nature thyroid is he believes causing my severe osteoporosis. I have found out recently that I have severe osteoporosis and he told my Endocrinologist that I needed to reduce it right down to zero. This recent diagnosis was a shock so I have been trying to reduce my recent blood results I got from blue horizon this week are

THYROID STIMULATING HORMONE * 0.01 mIU/L 0.27 - 4.2

FREE THYROXINE 12.9 pmol/l 12.0 - 22.0

FREE T3 4.4 pmol/L 3.1 - 6.8

I have Hashimotos my TSH has been low since I started on thyroid meds years ago, I had been doing fairly well on Nature thyroid for several years but because of his scaremongering I have now had to cut down on Nature thyroid from 3 and a half grains to 2 but of course felt awful, no energy, so have gone up to 2 and a half however I am still exhausted at times.However my Endo has told me that then osteo consultant is not just wanting me to reduce but actually wanting me off all medication!! To be fair to my Endo did say only you will know when you have gone too low and he did say its a balance but added that this other Consultant wanted zero meds ! I got the impression he knew stopping meds would be extremely difficult/impossible he is very good (unlike other ones I've met) he does listen and continues to monitor me even tho I self medicate but think his hands are tied because the osteo consultant has said stopping meds is the way forward to protect bones

A few weeks later he was right I really crashed and have had to put it up to just function I am worried that when I next go to the Osteo consultant he is going to be very negative and say I am causing my spine to deteriorate further because I am still taking thyroid meds. I have two spinal fractures and I am now on Alendronic Acid 70mgs and Accrete D3 which is vit D3 I self medicate vit B12 injections monthly as I have intrinsic factor.

My mother has severe osteoporosis resulting in severe curvature of her spine/ multiple fractures so I obviously am very worried about protecting my bones but she has only been on low dosages of Levo for her Hashis all her life and still got this! so I am confused why he is saying my self treating with Nature thyroid is causing the osteoporosis and I must stop. I feel like I am caught between a rock and a hard place. Stop thyroid meds be like a zombie but bones ok or bones deteriorate but I have some energy to live and function! surely it cant just be this choice!

Any advice on my latest bloods or advice gratefully received

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17 Replies
greygoose profile image
greygoose

It's not just a question of bones, if you stop all your thyroid meds and you are hypo, it will eventually kill you! You can't live without thyroid hormone. And low thyroid hormone isn't good for bones, either. I don't think your osteo consultant knows what he's talking about!

My only comment is that Alendronic Acid makes your bones more likely to fracture as they become more dense and brittle, like glass instead of wood. I don't know the answer, but you can't stop your thyroid meds if you want any quality of life - your Free T3 is pretty low already and you need T3 to grow new bone.

shaws profile image
shawsAdministrator

NDT was first introduced in1892. Before that we died an awful death. It is still used by many today along with blood tests but due to Big Pharma wanting a slice of cake the blood tests were introduced as being a perfect way to diagnose (instead of the clinical symptoms) (along with levothyroxine) and I think that is why, in the modern time that so many become more unwell or develop other problems.

Doctors prescribed NDT for years until they were withdrawn as it was stated levo was much preferable. Of course rumours abounded about NDT in order to replace it with levothyroxine saying it would give us heart problems or bone problems which I doubt is true.

If the osteo man is convinced osteo is caused by thyroid hormones (natural thyroid hormones) he doesn't know what he is talking about. I believe it is only because he believes the rumours about NDT as Big Pharma has been pretty persuasive and making False Statements to get Levo and Blood tests supersede NDT. In the USA they got paid pretty well by Big Pharma when levo and blood tests were first introduced. I also forgot to mention the 'additional prescriptions' for continuing clinical symptoms because the TSH was in range.

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

The above link is from a doctor who was also a researcher/scientist. He would never prescribe levothyroxine - only T3 or NDT.

If we are hypothyroid we will be very ill if we don't take replacement hormones - not immediately. Is this person knowledgeable? It will put a great strain in our body if hormones are withdrawn altogether.The brain and heart need the most T3 and every T3 receptor cell needs it also.

web.archive.org/web/2010112...

Excerpt from link below:

Good News About Bioidentical Hormones

The good news is that the TSH effect on bone density is relatively modest and is offset by the addition of estrogen, a bioidentical hormone, which increases bone density. (20) In addition, we routinely employ a natural bone building program to optimize vitamin D levels which protects and maintains bone density.

In conclusion, an excellent reason to switch from T4-only thyroid medication to natural desiccated thyroid is because it contains Calcitonin, protective of bone density and preventive of osteoporosis. T4-only medication does not contain calcitonin and is associated with loss of bone density and increased fracture risk. We have found good clinical results with a natural dessicated thyroid product called Naturethroid from RLC labs. Dosage range is from one to four Grains per day depending on underlying thyroid function and body weight.

jeffreydachmd.com/why-natur...

I think I would ask for a second opinion. An excerpt:-

Will Thyroid Medication Give Me Osteoporosis ?

New concerns were raised by Marci Turner in the April 2011 British Medical Journal reporting elderly women on Synthroid(tm) have increased fracture risk.(13)

Note: Synthroid is a T4-only medication, also called thyroxine or levothyroxine.

........

Unfortunately. all of the medical studies that examined the bone-thyroid connection used T4-only medication, none used desiccated natural thyroid, so we don’t have a good comparison study to evaluate the long term lack of osteoporosis from natural desiccated thyroid. A good use of NIH research funding would be comparing the bone density and long term risk of fracture with natural desiccated thyroid compared to T4 only medications. Don’t hold your breathe. The NIH is a government agency, and the government is influenced by Big Pharma dollars, so natural is out and synthetic is in. We may never see NIH funding for natural desiccated thyroid.

In conclusion, an excellent reason to switch from T4-only thyroid medication to natural desiccated thyroid is because it contains Calcitonin, protective of bone density and preventive of osteoporosis. T4-only medication does not contain calcitonin and is associated with loss of bone density and increased fracture risk. We have found good clinical results with a natural dessicated thyroid product called Naturethroid from RLC labs. Dosage range is from one to four Grains per day depending on underlying thyroid function and body weight.

jeffreydachmd.com/why-natur...

Judithdalston profile image
Judithdalston in reply to shaws

Just want to congratulate you on your very generous and knowledgeable answer Shaws ( and all the other various administrators etc) - you give us confidence in this forum's advice and expertise that help us all in our fight to gain and maintain our health across a range of illnesses as well as thyroid problems!

spacestar profile image
spacestar in reply to Judithdalston

I second that thank you for all the work you do which may go unrecognised in the wider world but is invaluable to people on this forum.

SlowDragon profile image
SlowDragonAdministrator

As you are taking vitamin D, are you also supplementing magnesium and vitamin K2 Mk7?

Magnesium is very often low when hypo and gut comprised. The fact you also have B12 issues suggests malabsorption of nutrients is likely

Link about magnesium and bones

betterbones.com/bone-nutrit...

drlam.com/blog/reversing-os...

K2 mk7

betterbones.com/bone-nutrit...

Marz profile image
Marz

Osteoporosis is a lifestyle condition according to Dr Sarah Myhill and is not helped by dosing additional calcium. There are osteoclasts and osteoblasts - the latter builds new bone and the former is involved in the breaking down of old bone cells and calcium is involved in osteoclasts .... There is so much you need to be taking for osteoporosis - so have a read of the link below ....

drmyhill.co.uk/wiki/Osteopo...

I have been T3 only for many a year and my local GP here in Crete went into a panic and sent me off for a Dexa scan - he was shocked at the almost perfect result for someone of over 70 :-)

What other meds are you taking ?

spacestar profile image
spacestar

Thank you for all for your comments, I am so grateful for this forum. When the Endo said the osteoporosis specialist wants you to reduce right down and I said to how much and he said to zero! he could tell I was horrified but I did say I would try to reduce but its been hard and with reducing I'm not exercising too tired for zumba or walking which I love! so that's got to be bad for bones! catch 22 situation!

The physical exhaustion was bad enough but when brain fog started I knew I had to go increase dose it was awful I just didn't want to speak and kept forgetting basic facts,really a horrible feeling.

Osteo man was clear, I have some curvature in my spine already plus two spontanous fractures also and that's why I started taking the alendronic acid medication I have heard others go down a more natural route but I had just had a bolt from the blue with the diagnosis as I know exactly what my poor mum has and is going through due to osteoporosis. Im not brave enough not to take the meds he prescribed its bad enough I will have to fight him when I go back, he will not be happy I've not cut down or stopped as he seemed to blame it all on NDT and being "over medicated" his words. I thought the latest results looked on the low end of normal so thanks to all who looked.

bantam12 profile image
bantam12 in reply to spacestar

Did you ask him what thyroid replacement to take instead ? If he was to say nothing then you know this Dr is one to run away from as he clearly knows nowt about thyroids.

I had an Endo once tell me I didn't need thyroid meds despite me not having a thyroid ! needless to say I only saw him once 😜

humanbean profile image
humanbean in reply to bantam12

I'm curious. What did the endo say when you told him that you didn't have a thyroid? Did he have the grace to look embarrassed? sheepish?

bantam12 profile image
bantam12 in reply to humanbean

Oh I'd given up by then so didn't bother, his opinion was very few people need Levo after RAI and he wouldn't consider treating anyone for the first year, the fact that I'd had surgery plus RAI made no difference. I saw him privately for a second opinion as my GP at the time was having a fit over my low TSH, so luckily I could ignore his opinions, waste of money that was !

spacestar profile image
spacestar

I supplement with magnesium malate Vit K2 Strontium which are all supposedly bone builders, the irony is I only requested a bone scan because when I went with my my elderly mother for her three yearly one the osteoporosis nurse said to me This is highly genetic, I think you should request a scan. Thanks to her I did and the muscular ache in my back that I had in fact recovered from a few weeks earlier turned out to be two fractures. No Consultant had ever suggested a bone scan and even when I did they were like why?

researcherUK profile image
researcherUK

They are mixing up several factors and causing you an unnecessary stress. You simply cannot be taken off thyroid medication, if you are Hypo.

Your TSH is low because you are on NDT which combines T4 and T3 and not because your T4 levels are very high to the extent they are upsetting the rate by which bone replacement is done.

Yes, there is a connection between Thyroid hormone and bone density. Too much thyroid hormone (T4) in your body speeds the rate at which bone is lost. If this happens too fast the osteoblasts may not be able to replace the bone loss quickly enough.

For healthy bones, you need a good ratio of T4/T3 so to dissolve old bones. However, you need optimal levels of T3 to create new layers/bones. Your current T3 levels are not optimal.

People who are on T4 only and are not converters are at a much higher risk of developing osteoporosis than someone on NDT.

Furthermore, other factors/hormones contribute to the bone density such as estrogen and progesterone.

I really feel for you!

spacestar profile image
spacestar

Thanks! good to know someone does! yes rock and a hard place spring to mind however I am a lot happier knowing its not just me that thinks this idea of zero meds and no replacement is madness so at least next time I can argue with him with some facts,he is not the kind to welcome debate on his treatment I could tell!

researcher do you think I could up my nature thyroid to 2 and three quarters?

researcherUK profile image
researcherUK in reply to spacestar

Are the blood results posted above with T3 at 4.4 on 2 grains? after how long on this dose? Yes, based on your symptoms on 2.5 grains, after the dose reduction, you can add that extra 1/4 of grain to make the daily dose 2.75 grains and see you feel. Then restest after 6 weeks. Optimal T3 dose at 75% of the range is 5.875.

spacestar profile image
spacestar

Results posted are on 2.5 grains for about 6 weeks now, I have upped to 2.75 now thanks very much for your advice and all who answered to help.

Cooper27 profile image
Cooper27

Just out of curiosity, when were vitamin D levels last tested? Do you know those numbers?

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