SO annoyed with myself.

[Hyposucks]

I saw my GP this morning to tell him I had increased my Levo dose from 75mcg to 100mcg since the beginning of December as all through November my usual hypo symptoms had returned; fatigue, spaced out, foggy brain etc. During October I’d seen another GP to discuss my intrinsic factor antibodies and asked for a thyroid blood test. She requested the absolute bare minimum and told me not get it done until just before Christmas which is why I waited/ put up with symptoms until the end of November.

NOVEMBER 2017 the results were,

TSH 0.52 (0.30-4.20)

Folate 7.3 (3.0- 20.0)

B12 432 (180-640)

JUNE 2017

TSH 0.05 (0.35-5.5)

FT4 19.4 (11-23)

FT3 5 (3.5-6.5)

Folate 17.1 (3.0-20.0)

B12 412 (180-640)

The GP this morning was flapping about my TSH was too low, I was over-medicated, it could lead to osteoporosis, blah, blah and my Folate was within range. I didn’t stand my ground as best I could but raised the point that it was my FT4 and FT3 that were more important than my TSH and that I felt normal when my TSH was 0.05 and in November I very much did not. He’s requested another blood test which includes FT4, FT3, B12, Folate which I shall do tomorrow morning (fasting).

It’s always the way that you think of things to say afterwards and I’m kicking myself that I didn’t have Dr Toft’s paragraph 6 article with me.

Could someone please explain/remind me why low TSH does not lead to osteoporosis?

Many many thank you's.

[greygoose]

Because TSH has nothing to do with bones. It does what it says : stimulates the thyroid. It also has a role to play in conversion, but it has nothing to do with bones. Bones don't need TSH.

Doctors cannot tell the difference between a suppressed TSH due to over-range FT3 that is found in Grave's disease, and the TSH suppressed due to taking a decent dose of thyroid hormone replacement. In the first case, it is the high T3 that suppresses the TSH and slightly increases the risk of osteoporosis. In the second case, the TSH is low because it is no-longer needed. The pituitary senses that there is thyroid hormone in the blood, and reduces its out-put of TSH. What is more, an over-range FT3 due to exogenous thyroid hormone, does not have the same clinical effects as over-range FT3 due to an over-active gland. So, no, a TSH of 0.52 - which isn't even under-range - will not cause osteoporosis.

[Hyposucks in reply to greygoose]

Greygoose,

Thankyou for your prompt reply. On my next visit to the surgery I shall enlighten the doctor that bones don't need TSH. Short and to the point. That's a very good way to put it but if they need further enlightenment I shall take notes of your answer. I may even be brave enough to ask where their evidence is that low TSH leads to osteoporosis. I feel like the lion in the Wizard of Oz.... I need to get some courage

and brain that remembers!

Thanks again.x

[greygoose in reply to Hyposucks]

That's a very good point! Ask for a link to a scientific paper that demonstrates the link between low TSH and osteoporosis. Bet he won't be able to provide one!

[shaws in reply to Hyposucks]

This is a link which may be helpful:-

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

I believe the endocrinology believe in rumours i.e. about bone thinning etc.

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

Maybe give a copy of the following to your doctor and highlight the phrases that appeal to you.

healthunlocked.com/thyroidu...

plus

rcpe.ac.uk/sites/default/fi...

[Fruitandnutcase in reply to shaws]

Shaws, when I was being treated I used to go armed with my notebook full of ‘highlighted phrases that appealed to me’. A thyroid patient can never have too much evidence 😉

[shaws in reply to Fruitandnutcase]

You are right the only problem is that doctors/endocrinologist have been so poorly trained they wouldn't recognise a clinical symptom if it jumped out on them.

The all have to undergo a 'refresher course' and learn from their poor patients on how best to diagnose and and treat them to optimum, not the TSH alone.

[moniacho]

Hi Hyposucks and greygoose . Few weeks ago I had similar discussion with my endo, who I saw due to suspected diabetes insipidus. She said she doesnt like my suppressed TSH, which is very low, something like 0.05 (dont remember exactly now). And she said such a low TSH increases my risk of osteoporosis and heart issues. I did tell her that TSH is a signal of pituitary gland towards thyroid, signalling that there is not enough thyroid hormone in the blood. And since I do take hormone replacement, there is enough hormone in the blood and TSH is low. She just repeated the same thing: low TSH increases risk of osteoporosis, and asked me to decrease my levo. I said no, because I feel well now (not thanks to doctors, but thanks to this site and what I discovered about vitamins etc). She then wrote a letter to my GP saying that I refused to decrease the levo even though she thinks I should due to my low TSH. So Hyposucks, even if you did remember what to say at the time, chances are that they would ignore it anyway...

[Hyposucks in reply to moniacho]

Moniacho, You are quite right. It's like banging your head against a brick wall. It is also so time wasting and exhausting to go around every doctor in your surgery in search for one that has an inkling of understanding in thyroid matters. It is so frustrating and soul destroying. Thank goodness for this forum and all the helpful people in it. It worried me that if the doctor refused to increase my Levothyroxine and put me back down to 75mcg then I would have no choice but to source Levothyroxine by myself online. I can be very stubborn and will not be left to feel unwell just because of the doctors lack of knowledge. But it remains to be seen. I had my blood test this morning, so we shall see the outcome early next week.

[humanbean in reply to Hyposucks]

If you had to source thyroid meds yourself it would be easier and cheaper to find NDT rather than Levo. Whenever I've seen Levo for sale online it has been very expensive.

[Hyposucks in reply to humanbean]

humanbean, I did find a uk website 100mcg, 56 tablets for £22. But low and behold their website is being upgraded so they cannot take orders at the moment.... Great help..not! I must admit I hate taking Levo but transitioning on to NDT or Levo +T3 is a whole new ball game and pretty scary with sourcing from other countries. I need to research that subject more. Thanks for making me think.x

[humanbean in reply to Hyposucks]

Any UK website selling any kind of prescribed meds without prescription is breaking the law.

Having said that, it isn't always possible to say where a website is based. Just because it has .uk on the end of the web address doesn't mean it must be based in the UK.

[Hyposucks in reply to humanbean]

Yes a good point humanbean. Having increased the dose myself I only have 7 days supply left and now that the doctor is questioning my increase I cant do a repeat prescription. He will have to prescribe more next week, the question is will it be 75mcg or 100mcg. Am I going to have to fight tooth and nail or is he going to roll over like a puppy..... the wait is killing me!

[greygoose in reply to moniacho]

Yup, been there, done that, stuck to my guns and just kept repeating no, I'm not going to reduce my dose. It's my life, my body, my health, I will do as I think best.

Doctors are there to advise you, not dictate to you. They tell you what they think is best, but you can not take their advice is you so wish. And, if they stick to their guns, and try to brow-beat you, just ask for proof. They are not used to having to provide proof, they are just used to patients doing as they're told. They are going to have to learn that it's time to change their ways! Patients are now more informed than they have ever been, and are no-longer just going to bow down and say yes doctor, of course doctor, I'll be a good little girl and do as I'm told. They have got to get used to patients that question them and demand detailed answers before they do anything! The revolution is never going to get off the ground with we just keep tugging our forelocks and give in. And, we always have the choice of self-treating, these days, to hold over their heads.

[Hyposucks in reply to greygoose]

greygoose, how wise you are and thank you for your encouragement. Definitely my body, my health, my life. I know how I feel and what level my TSH has to be for me to feel well. Such a tiny discrepancy in numbers but a big difference in how well/badly I function.

[greygoose in reply to Hyposucks]

Well, to be strictly technical, it's not the TSH that makes you feel anything. And it's really not a good guide because it rarely reflects thyroid status. It being suppressed doesn't always mean that your FT3 is in the right place for you. Which is why they really shouldn't be dosing by it. The TSH can be suppressed, but the FT3 still too low. It's low T3 that causes symptoms, which is why they should be testing the FT3.

[Hyposucks in reply to greygoose]

That's very true greygoose. The doctor requested FT3 in the blood draw I had this morning so it will be interesting to see the lab results or whether they test it at all.

[greygoose in reply to Hyposucks]

It's a sad, sad world where a lab technician can over-rule the instructions of a doctor. It wouldn't happen anywhere else but in the UK! Here in France, a lab technician wouldn't dare even question the tests requested by a doctor!

[Hyposucks in reply to greygoose]

I agree greygoose, we live in the 21st century but some things are still very primitive. I lived in France for 7 months about 17 years ago. Loved every minute of it. Perhaps I should not have left!

[greygoose in reply to Hyposucks]

It has it's good points. And it's bad points. Does rather depend where you live.

[Hyposucks in reply to greygoose]

I know. I lived in Anet about 50 miles west of Paris. On Rue Philibert Delorme. Such lovely memories.

[greygoose in reply to Hyposucks]

I don't know that region. I'm about 45 kilometres north of Paris. And it's not very nice, here.

[shaws in reply to moniacho]

They appear to be based on rumours and not actual scientific reasoning. For instance, someone who has had thyroid cancer has to have a suppressed TSH. I don't seem them getting osteo etc etc. Maybe the Pharma Companies want us to be prescribed other medications for our remaining symptoms.

rcpe.ac.uk/sites/default/fi...

Dr Toft (link above) is a distinguished Endo and physician to the Queen when she's in Scotland.

This is important too:

healthunlocked.com/thyroidu...

[Hyposucks in reply to shaws]

That is a very good point shaws. Thank you for the links, they are saved to print out over the weekend. x

[cwill]

Also remember that the law around informed consent has changed: they can no longer rely on dogma, opinion etc but must be personally familiar with the literature to outline the exact risks and benefits of proposed treatment approach. So when they roll out the party line:

1 What up to date evidence do you have for that position as the research that I read suggests that those beliefs have been found to be untrue?

2 What evidence do you have for a compromised cardiac or skeletal system in me?

3 What are the exact risks and benefits of me reducing or altering my dose?

4 If I am at risk of kidney, liver, cardiac, etc complications of inadequately treated hypothyroidism as the up to date research suggests then I need your help to weigh up ALL risks before I make a decision.

Probably best to have someone there to help you get an answer to the above, unfortunately experience shows that the other person should be male and making notes.

[Hyposucks in reply to cwill]

Thank you cwill, they are big guns questions! Definitely take my husband for that consultation. He looks the part even though he cannot get his head around my hypothyroidism... poor luv.

[cwill in reply to Hyposucks]

We had the best result when he kept notes and simply looked serious but didn’t speak. You need back up and preferably they need the questions that you want answers to in case you feel bamboozaled.

[Hyposucks]

Thank you Greygoose, my determination is well and truly fired up. x

[helvella]

Hyposucks,

I suggest you have a read of diogenes' contribution on this thread:

healthunlocked.com/thyroidu...

I couldn't locate another of his contributions which explained further.

[Hyposucks in reply to helvella]

Many thanks helvella, I have saved this to print later.