Advice before Endo discharges me on Tuesday.

[ju01749]

Hi all.

I had been under Endo who I felt was actually listening to my problems/ symptoms and going the extra mile to get me well although felt my symptoms are not Thyroid related but promised to find out what was the problem. I was referred as I had low TSH and refused to drop my Levothyroxine again as my Hypo symptoms had been much worse and it did not raise my TSH but caused a further drop of TSH, T4 and T3 each time (July 2015 -TSH 0.03 0.34-5.60 T4 12.8 no range T3 4.5 3.80-6.00) they had not picked up on this but he agreed this was not text book and wouldn't drop my Levo again and would been taking advice from some Professor. I had bloods for cortisol levels which came back low and a follow up Short Synacthen came back as "normal" and my TSH had gone down to 0.01 With no Hyper symptoms . He then wanted me to drop my Levo from 150 to 100mg " to bring my TSH into range before moving ahead ( going back on what we had agreed but I thought I would play ball).

My latest test show my TSH went up to 0.15 (0.34-5.60) T4 from 12.8 to 13.7 (no range) T3 from 4.5 to 5.3 (3.80-6.00) All went quiet after this and on chasing have found out I Will not be able to see him again and there is no mention of further investigations but I have to see the Consultant who doesn't have the best of reputations and who's area of interest is Diabetes.

I don't know what to ask next and feel he will want me to reduce my Levo further and discharge me. I have been supplementing vitamins/ minerals since the summer and feel they are what is propping me up and have helped but not solved all my symptoms.

My results will not upload but can be seen on past posts.

Is there anything I should be asking before I loose my chance and am discharged ?

Thank you 😘

[Musicmonkey]

Ju your results are quite similar to mine and my Endo hopes (when other issues are resolved( to put me on a combination of T4 and T3.

He wrote to my GP telling her that I very likely had secondary hypothyroidism not primary because i have always had low TSH and low T4. It looks like you have the same if the T4 range is 12-22. Do you know if you have ever been tested positive for antibodies, because I never have.

Can you be referred to a different Endo? One on Louise Warville'a list? You need someone who understands the thyroid and not all do

If not, read the info on Thyroid UK about diagnosis where it shows different scenarios. If your TSH has always been low you may not be converting. It may be a pituitary problem.

I am not a medical advisor, just a fellow sufferer.

Good luck on Tuesday.

[ju01749 in reply to Musicmonkey]

Thanks Musicmonkey,

I don't think I have ever had antibodies tested? I only have results back to 2008 when my TSH was 0.26 stayed at that until 2011 when it dropped to 0.01, 0.02 in 2014 then 0.03 and 0.01 in 2015. My T4 was 20.5 2008-2010 (during pregnancies on 200mg) ,21.9 in 2011 150mg 17 2012, 16 2013 15 2014 12.8 2015 and 13.7 2016 on 100mg.

I have been told very strongly by letter even before my first appointment that they will not prescribe T3, it seem that Levo and TSH are the only things they work with.

It was my plan that if I got no where with them I would go down the Private/ NDT route????

Ju

[Musicmonkey in reply to Musicmonkey]

Sorry I meant to say that I don't have antibodies! Also, my T4 has risen on Levo, but my T3 remains stubbornly low. I hope you can find a sympathetic Endo.

[shaws]

It's a pity that some Endos are more concerned about the whereabouts of the TSH rather than the patients clinical symptoms.

It is a myth that the TSH is a 'fixed' point because if we get tested early a.m. it will be different around 8 p.m. Lower a.m. higher p.m.

Adjusting doses for patients results in a merry-go-round of doses increased/decreased. Not good at all for the patients who cannot stabilise their hormones.

thyroiduk.org.uk/tuk/thyroi...

capitaldistrictvitalitycent...

[greygoose in reply to shaws]

TSH is higher in the morning and lower in the afternoon. Which is why it's best to get it tested as close to 8 am as possible.

[greygoose]

I think you're better off without that endo. He will make you ill by keep lowering your dose in a vain attempt to increase your TSH.

It's difficult to say once you're on thyroid hormone replacement, whether you have secondary hypo or not. Would need to see your results at the time you were diagnosed to know.

It doesn't matter if the TSH is low, it's not going to have any adverse effect. And it is practically impossible to get the Frees up to a decent level and keep the TSH in range. Doctors Don't seem to realise this. In fact, they just Don't know very much about thyroid at all.

So, how do you feel with your FT4 at 5.3? If you still feel unwell, then ask for an increase in dose on those grounds. The purpose of thyroid hormone replacement is to keep increasing the dose until the patient feels well and all their symptoms have resolved. NOT to keep reducing the dose until the TSH is exactly where THEY want it.

[ju01749 in reply to greygoose]

Hi grey goose, I think I am going to have a fight on my hands to just stay where I am on 100mg of Levo. I went originally because my symptoms where worse than ever and I had really bad brain fog, had always thought I had baby brain that never went but my memory, inability to think and express myself was scary.

I requested bloods as advised by yourselves which did show deficiencies or low in ranges and I have been supplementing which has really helped so I think some of my symptoms were due to that although they never even considered that.

I'm not sure if I have a problem with hormones as I keep breaking out in spots on my face, scalp and back, my hair is greasy quickly and I get bad PMT which I never suffered with any of this previously.

Thanks Ju

[greygoose in reply to ju01749]

No, they wouldn't consider vitamins and minerals because they know nothing about them. They just have no idea how important they are - in fact, they think vits and mins are of no importance! Glad to hear they're helping you.

All your symptoms would seem to point to a hormone imbalance. Once one hormone is out of kilter - like thyroid hormones - the rest become unbalance also, because they are all interdependant. But, obviously, a hormone specialist wouldn't know about that! I think you might have to take things into your own hands if you want to get well. This bunch of nanas are obviously going to keep you sick with their ignorance!!!

[ju01749 in reply to greygoose]

I have just remembered that I was told if my TSH is left suppressed at <0.10 for an extended period I have an increased risk of developing atrial fibrillation and osteoporosis.

J x

[greygoose in reply to ju01749]

A TSH of 0.10 isn't even suppressed. 0.001 is suppressed, yours is just low.

They are just using scare tactics. The TSH has nothing to do with the heart or the bones, it just does what it says on the box : stimulates the thyroid gland - Thyroid Stimulating Hormone.

Try looking at it logically. People with hypERthyroidism have a higher risk of FA and osteoporosis - note that 'a higher risk' - not saying they will definately get it. But, people with hyper not only have a suppressed TSH - a genuinely suppressed TSH, not just a low one - they also have a high FT3. And it's the excess T3 that causes the risk.

If your TSH is suppressed because you are taking thyroid hormone replacement - and it can sometimes happen on quite low doses - it can't stimulate anything and therefore cannot cause a high T3. Your T3 can be high if you over-replace, but it has nothing to do with the TSH.

This is a leap too far out of the box for most doctors to contemplate but if they knew the slightest little thing about how the thyroid works, they would see that what they're saying is rubbish. The trouble is that what they are taught is controlled by Big Pharma who is making a fortune out of keeping us ill. They Don't want doctors to learn how to make us well, so they dish out these scare tactics in med school and doctors just Parrot them to their patients without really understanding how it all works.

If they say that again, ask them for proof. Ask them for an internet link, or a research paper where it's been proved that a suppressed - remember, suppressed, not just low - TSH is dangerous. They won't be able to give you one because it doesn't exist.

[Oliva1955]

I have had a similar result with my blood work ..... TSH <0.05. T4. 7.5 , T3 , 3.5

All below range and this is after ignoring the private endo (who decreased my dose to 1 grain and would only give me a prescription for the latter) and increasing from 11/2 to 2 grains ..... My hypo symptoms have returned , I have been supplementing with all that has been advised and all good except for low ferritin which I have addressed by doubling the dose ..... I am also waiting for adrenal saliva test results .....i am not very confidant at self medicating ....l,trying hard to educate myself ...l but soooo hard to take it all in 😥

[monty6]

Looking like you've got Secondary Hypothyroidism your Endo should know to ignore your TSH and rely only on T3 and T4.

SH is usually caused by a pituitary gland tumor, Have you had a MRI.

Seems you suspect Cortisol problem and Short synacthen test is fine for testing adrenal glands. But if you have pituitary problem not producing sufficient ACTH it's useless in diagnosis of Secondary adrenal inefficiency. You need Insulin tolerance test.

[ju01749]

No I haven't had an MRI I am totally clueless and finding it a bit difficult to understand it all tbh. When i mentioned the pituitary I was told no I didn't but what test would I need to rule that out the MRI?. I don't think I have had antibodies tested either. I think mine is hereditary as everyone on maternal side had thyroid and autoimmune diseases.

Thanks

J

[greygoose in reply to ju01749]

ju, it isn't looking like secondary hypo, Don't worry. It would only look like secondary hypo if these were your first results before being diagnosed. Your TSH, as I said above, is low because you are on thyroid hormone replacement (Levo), I very much doubt it's anything to do with the pituitary. How high was your TSH when you were diagnosed?