Low tsh

[jodary]

I have many run ins with my gp after thyroid blood tests which obviously are only done annually and my tsh is very low. I do medichecks myself and my tsh is very low my T4 slightly over range and my T3 low at bottom of the range. Am currently still working on my low Vit D and low folate but am still wondering why my tsh hasn’t risen given that my T3 is so low. If I go back a few years tsh did rise but remains low now below their acceptable range. Their range drives me nuts as they don’t care where in the range results are . It could go from the bottom of the range to the top of their range and they don’t even wonder why ! That’s not monitoring a condition correctly, any change should mean something but do they even ask how you feel ? My gp says they dose by tsh not symptoms as symptoms are common to a lot of things. How ridiculous!

[TiggerMe Ambassador]

Sounds like you need to ask for a referral to an Endocrinologist and get some T3 as above range fT4 isn't a good place to be long term

If you request the list from Thyroid UK you will hopefully find a knowledgeable one in your area

[jodary in reply to TiggerMe]

Have been hypothyroid for almost 40 years and have seen many endrincologists in the past . Maybe before T3 was prescribed, I don’t know. But was never offered any as T3 was never tested in those days although it never is now. I was wondering why my Tsh doesn’t rise if my T3 is low as gps won’t do anything if it’s not raised. And that was my main question. I know an option is to source it myself but am not confident doing that as am on so many other medications.

[TiggerMe Ambassador in reply to jodary]

TSH low due to high fT4... as we all know TSH is not reliable, I'd say your much safer self sourcing and monitoring than being treated by the NHS, have you thought of having a consultation with Roseway Labs?

[jodary in reply to TiggerMe]

I’ve not heard of roseway labs. The trouble is as I have a form of blood cancer I find even my gp doesn’t want to see me and tells me I have to consult with my consultant who isn’t interested in my hypothyroidism and I’m in no man’s land. I’ve probably wasted a lot of years of my life not being treated properly for hypothyroidism before there were such things as this forum. It wouldn’t surprise me if my other health conditions were caused by incorrect thyroid treatment over many years !

[TiggerMe Ambassador in reply to jodary]

Perhaps worth putting a post up to see it there are any others dealing with cancer, I can't see how having a lack of T3 can be good with any other health issue 🤷‍♀️

[redhead41 in reply to jodary]

My husband was in the same position - Hashimotos 1989- never well treated, non Hodgkin's lymphoma 2015. All symptoms blamed on cancer and they would not treat his very low t3. I believe very strongly that he died in 2021 not from the cancer but because of the very low t3. Unfortunately we did not find this group until it was too late and even finding this group did not help because the NZ doctors do not recognize the use of t3 which is not funded here and very difficult to find someone to prescribe it. From what I have learnt, I would lower the t4 and if this doesn't increase the t3, source it yourself. Do need to make sure ferritin with CRP, vit d, vitb12 and folate are optimal. Supplement with selenium and zinc. Are you gluten free? Made a huge difference but not enough on its own.

[Kimkat in reply to TiggerMe]

You won’t get T3 from an endocrinologist unless you are dying or you go private in the NHS

[TiggerMe Ambassador in reply to Kimkat]

It can be a battle but I get it from the NHS and it wasn't to much of a fight if you are in the right area and see a T3 aware Endo

Or do you mean because of the blood cancer?

[jodary in reply to TiggerMe]

I wonder what T3 results will persuade an endo to prescribe T3 as mine are in their precious range ! I do find other medical professionals do not like the fact I have a blood cancer and will say my symptoms are due to that and not thyroid related .

[TiggerMe Ambassador in reply to jodary]

If your fT4 is high in range and your fT3 is low but still in range that ought to be enough

[Kimkat in reply to TiggerMe]

No sorry, I don’t have a thyroid, so I decided to see a private endocrinologist, he is trialling me on T3 but the NHS won’t pay for it so I pay myself .

[TiggerMe Ambassador in reply to Kimkat]

I started self sourcing whilst waiting for the NHS Endo appt

[Kimkat in reply to TiggerMe]

I didn’t want to see my NHS endo, he hasn’t done anything to help me in 7 years, I don’t think he even liked me because I was asking too many questions.

[TiggerMe Ambassador in reply to Kimkat]

Have you looked at the Thyroid UK list to see if there is a better option in your area?

[Kimkat in reply to TiggerMe]

Not sure what you mean? I downloaded the list of private doctors and endocrinologists and chose one that I thought would suit me.

[TiggerMe Ambassador in reply to Kimkat]

Was there not a suitable NHS one in your area?

[Kimkat in reply to TiggerMe]

Unfortunately no.

[PamBow]

Hi Jodary,

I found your recent chat interesting.

I sometimes don’t comprehend level references regds thyroid results and why people have t3 prescribed along with Levothyroxine.

This informative site recommended I needed a slight increase in my levothyroxine from 75mcg to 100. My doctor got impatient with my request .

I haven’t seen him for a while!!!

Since I last saw him I have been put on Watch and Wait for a low grade blood cancer called Waldenstroms M. I see an haematologist every 3 months. My thyroid isn’t discussed. I have PA and have 12 weekly inj.

I understand from your last post you have a type of blood cancer. If you would like to chat please do so.

[MyMeS in reply to PamBow]

Greetings PamBowI'm sorry to hear your doctor got impatient with a request of just 25mcg increase of Thyroxine

Why are they so stingy & reluctant to give the correct dose

I just don't comprehend nor understand

Mine wishes to lower my Thyroxine when my blood test results show my Thyroid function is low too

But I know by all my symptoms they should be increasing my dose, as opposed to decreasing

Really baffling & confusing

Just feel at a complete loss how to handle this

😥

[MyMeS]

GreetingsI'm So Sorry To Hear You're going through all this

My gps the same & wishes to lower my thyroxine every time one of my blood tests results shows my thyroid is low

Ridiculous is so true

I'm feeling all the same symptoms i felt when 1st diagnosed with under active thyroid

Extreme tiredness, sluggishness

hair falling out & my hair is immensely dry all over again

Weight gain too

They should increase Thyroxine with our symptoms not lower it

Clearly these types of symptoms are significant signs we're not receiving enough Thyroxine but clearly in lack of Thyroxine instead, to the contrary of what they inform us

Why do they ignore such dangerous symptoms

I used to see an Endocrinologist but he's so expensive

Have you informed anyone whom's been able to give constructive guidance?

I really hope & pray so

[arTistapple]

I couldn’t get an endo to treat me. I did go privately but she stopped treating me after a problem arose introducing T3.

I realised (in my case) I had to get a cardiologist onboard. This has turned out be a bit of a mistake. No-one would treat me without a cardio on board (I thought) and now no-one will treat me because I have a cardio on board.

Honestly it’s a trap whichever way you turn. Not only do other specialisms not understand endocrinology, they do not accord it it’s rightful place. And very importantly endocrinologists do not step up! They have no faith in their own specialism.

Whilst there clearly should not be a specialism which has clout over the others, there surely is and endocrinology (re: hypothyroidism) is nowhere in the game.