Doctor just rang me about TSH: Hello everyone... - Thyroid UK

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Doctor just rang me about TSH

birkie profile image
16 Replies

Hello everyone ❤️

As I posted a few days ago I saw my doctor about levo not working... I also had a blood test for cholesterol and he did my TSH which I didn't know about,, he's just rang to say my results are.. my TSH is 0.1...the ranges are... 0.30-4.50..mU/L he says he wants me to go back down to 50gm levo until the endo gets in touch about the T3 trial.... I've only been on the 75mg levo... Which is Eltroxin), for just over 2 weeks when I was on 50gm my TSH was 8.7..sorry he never done T3 or T4.. This time just TSH... I am not good today and have spent most of the night on the loo Again!!! With bowle pain loose bowels acid reflux which was terrible I'm exhausted today and are in bed again 😩 obviously I'm wondering why only 75mg of levo for just over 2 weeks as made my TSH drop so low I know a low TSH is OK for graves without a thiyroid so this new gp seems to be playing the TSH card to diagnose me also I didn't know he was doing a thyroid blood test it was only for cholesterol so I took my levo that morning 🤦‍♀️ obviously when I had a suppressed TSH and my T3 was 39.8 I was diagnosed as hyperthyroidism finally graves and had the symptoms of overactive thyroid this is what I'm having now to having gone up to 75mg it's confusing.. I'm going to retreave my results on Monday by print out as it's fri and to late to aquier them now... Any insight in to this development would be apriciated kind thanks

Karen ❤️

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16 Replies
SlowDragon profile image
SlowDragonAdministrator

Suggest you refuse to reduce dose until they do FULL thyroid test of TSH, Ft4 and ft3 plus vitamin D, folate, ferritin and B12

Have you asked if you can try liquid levothyroxine yet?

birkie profile image
birkie in reply toSlowDragon

Hi thanks for the reply slowDragon..

My gp wants me to stay on the levo until the endo makes a decision about trialing me on T3.. Obviously I'm not going to sit back for weeks waiting for the endo to make his desision I will be bugging my surgery every day.. The only thing about going up on the levo is the side affects of it on my bowles and stomach as I said I'm now having hyper symptoms and I know what their like had them for over 3 years before diagnosis of hyperthyroidism /graves then had thyroid removed due to it being toxic.. If my so called endo drags his heels on this I will demand I try liquid levo because as I say I'm not willing to wait this out its now been over 3 years of sheer hell for me I'm no better and feel awful every day would love to give my endo and doctors a dose of this illness for just one month... 😠

Lora7again profile image
Lora7again

Have you tried NDT?

birkie profile image
birkie in reply toLora7again

Hi Lora7again ❤️

No not been given the chance I'm currently waiting on endo trying me on T3 but have to stay on levo until its sorted I can't buy my own as I'm on a tight budget 😵😵

SlowDragon profile image
SlowDragonAdministrator in reply tobirkie

T3 is almost always added as very small dose alongside levothyroxine

Endo would be highly unlikely to consider just T3

So you usually need to get almost stable on levothyroxine before T3 is added

birkie profile image
birkie in reply toSlowDragon

Hi slowdragon

I pretty sure they will never get me stable on levoroxine as I have to many issues with it.. So they will need to look at other thyroid medication for me... 👍

SlowDragon profile image
SlowDragonAdministrator in reply tobirkie

Yes I agree....but my point is it’s usually levothyroxine (often liquid levothyroxine) plus small dose of T3 alongside levothyroxine

birkie profile image
birkie in reply toSlowDragon

Hi

OK I see now.. I would be willing to try that but gp refused liquid levo until endo gets bk about T3 as I say I will keep on at them about the T3... Because I know with this virus from China the system will be running slow on other matters.. Already in the news today about NHS not being able to keep up with this virus.. And I think they said 46million was being used to tackle the problem... Hummm I wonder how much will really be used to tackle it.... 🤔🤔

McPammy profile image
McPammy

It’s hard to say what’s going on without the full TSH, T4 and T3 results together. I could not get stable on Levothyroxine alone. Even when my T4 was at the ceiling I was only converting 8% to T3. Later it was proven with T3 bloods tests and DIO2 gene test that I’m a very poor converter. As soon as T3 5mcg twice a day was added to my 75mcg Levothyroxine liquid a day it was nothing short of a miracle for me. Ask to see if you can bring your Endo appointment brought forward as you are pretty desperate on Levothyroxine alone. Speak to their PA at the hospital, there could be a cancellation. If they do decide you need T3 I feel the best brand is Mayne Pharma 5mcg on the NHS for 5mcg doses. I personally prefer ThyBon Henning 20mcg which is private prescription and cut into quarters. If you are a poor converter T4 to T3 you will not get better on Levothyroxine alone.

birkie profile image
birkie in reply toMcPammy

Hi McPammy

I'm actually waiting to see what response my gp gets from my endo as he was writing an e-mail to him as I was in the room.. Saying I'm not converting or absorbing the levo my bloods last draw were T3 on the floor TSH high both my normal gp and this new gp agreed levo does not suit me I'm not good on synthetic meds I'm not at all surprised levo has not worked for me.. Can you tell me is T3 in table form? I ask this because I'm not good at tablets sitting on my stomach waiting to break down.. ❤️

McPammy profile image
McPammy in reply tobirkie

Yes T3 is tablet form. There may be a way to dissolve in a correct amount of water and draw in a syringe then take in liquid form. I have read this on Mercury Pharma 20mcg T3 if you need less than 20mcg. But it would be a phaf doing all that 2/3 times a day. See how you go on T3 tablets first. They are very effective and fast acting. When I was on Levothyroxine alone I thought I wasn’t absorbing or sometime. It wasn’t that it was that my body could barely convert to active T3. I’d be a state each time I took my Levothyroxine, fizzing all over, upset stomach. I believe my body was trying it’s best to convert but couldn’t. Also when T3 is low ones cortisol can increase to try and compensate.

birkie profile image
birkie in reply toMcPammy

Hi again mcPammy

When I found out my thiyroid had to be removed my first question was what if the levo does not work for me.. Obviously surgeon and endo gp said this is impossible.. But my gp knew I'm bad on synthetic meds well again I'm right the levo is not working for me.. I have bad stomach and bowel problems with it but gp, endo said I needed to take it.. 🙄 I'm interested in your thoughts on cortisol mainly because my symptoms have become worse since upping the levo... 2 main things one I've started having a raging thirst again and my face is puffy my blood pressure was high when gp took it on Thursday and wants to re take it on the 16 march.. Before I got my diagnosis of hyperthyroidism/ overactive thyroid my symptoms were fast heartbeat, sweating profusely, running to the loo, raging thirst. Total exhaustion tremors... I'm now having the same symptoms except the running to the loo it has been their since going on levo.. But the raging thirst is weird could it be linked to cortisol and could my cortisol have been affected by my hyperthyroidism as it took my surgery 3 years to diagnose me.. Would like your thoughts on it if you can.. I don't think I've had my cortisol checked... ❤️❤️

McPammy profile image
McPammy in reply tobirkie

I’m not sure really but a raging thirst is sometimes connected with diabetes.ive not had any thirst. Have you had your glucose checked. It’s worth while having a 9am cortisol through your GP. It’s all connected as it’s all about hormonal balance. It’s about getting them all balanced to give you well being feeling.

You need to know your T4 and T3 levels along side your TSH to give a good picture.

birkie profile image
birkie

Hi mcPammy

Thanks for your reply ❤️

I've not got diabetes as he did a test it was OK... But I did Google high cortisol and raging thirst was one of the symptoms also a puffy face and total fatigue which is how I'm feeling.. I'm at my surgery on Tuesday for more bloods I will ask about T3and T4 my surgery will only do them if I insist on them.. Obviously I didn't know the gp had requested a TSH I thought it was for cholesterol only it was a fasting test.. But I'm also having kidney pain I've put this down to the levo I'm peeing a lot more to and I had a bilirubin test which was a bit off also on my last to blood tests I had stage 1 KD.. My gp is keeping an eye on this.. 🤔

SlowDragon profile image
SlowDragonAdministrator in reply tobirkie

Kidney disease frequently linked to being hypothyroid and should improve once correctly treated

McPammy found liquid Levo works better ....this was first step before adding T3 alongside

SlowDragon profile image
SlowDragonAdministrator

Link re kidney disease and being hypo

ncbi.nlm.nih.gov/pmc/articl...

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