First Clinic today

[PaulH1986]

Hi All

So today was my first clinic for this hypothyroidism...

Finally got a straightish answer, i have "primary hypothyroidism"...

My bloods done this morning have only just got back to my consultant, 3hrs after my clinic appt so just received a phone call with very basic bloods results as per below:

TSH 3.8 (0.35-5)

FT4 16.6 (9-24)

FT3 4.9 (3.5-6.5)

Thats all the info I have currently...

If anyone viewing this remembers my last post my dosage went up to 100mcg, after taking this for 2 weeks and experiencing heart palputations, My dosage has now been reduced to 50mcg...

Initial dosage was 75mcg, then up to 100mcg, now back down to 50mcg...

The consultant said she thinks the supplements I had been taking had a massive effect on my thyroid levels but things now seem to be normalising...

Any input? Direction? Advise? I have no idea wtf (pardon my french) is going on???

Thanks

Paul.

[SeasideSusie Remembering]

Paul

Your dose was reduced after those results posted above?

If so why? What reason has the endo given? Your TSH is far too high for a treated hypo patient and your Free Ts are both well within range, if anything on the low side.

[PaulH1986 in reply to SeasideSusie]

Hi susie,

All i got from her was - the numbers so far have dropped significantly and she is concerned she will now put me into a hyperthyroid state, as the numbers have dropped so quickly...

The fitness supps i was taking have been stopped since initial diagnosis and she thinks they had an effect on my numbers, as some products contained soy isolate proteins...

She has bee talking with her senior consultant and will call me again tomorrow with any updates... But im to start on 50mcg from tomorrow morning...

I mentioned about the .01 being the optimum figure and thats what i would like to aim for, and she point blank said that is only the case if you have had thyroid cancer for a normal hypo patient 0.35 is the minimum ref range...

I dont know enough to challenge her, but it did seem strange I had been having heart palputations almost as soon as I started on 100mcg???

[SeasideSusie Remembering in reply to PaulH1986]

Paul

Where did you get .01 as the optimal figure? You'll see us say on here that the aim of a treated hypo patient generally is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their ranges if that is where you feel well.

Are you being reduced from 100 to 50mcg? If so why the big jump? Surely 75mcg would be better.

[PaulH1986 in reply to SeasideSusie]

Sorry 1 is what I meant...

Yes reduced from 100mcg to 50mcg...

All I know is what i have said above she is concerned she is turning me "hyper"...

Prob would have been better to leave me at 75mcg for 6 weeks before playing around...

Ive only been on these meds for 42 days in total...

As i say i dont know enough to challenge her, thats why i ask and post here... 🤔🤔🤔

[SeasideSusie Remembering in reply to PaulH1986]

Paul

I think you're being messed about - too many changes in too short a time. 6 weeks and you went from 75mcg to 100 and now 50mcg.

Maybe go along with her but you're likely going to feel unwell. Your TSH is way too high, your free Ts are less than half way through range. See how you go but I would keep a diary and make sure you have some kind of follow up in 6 weeks, maybe phone and speak to consultant or see if your GP will do what's necessary. You may need to increase dose by 12.5mcg each time rather than 25mcg.

[PaulH1986 in reply to SeasideSusie]

Susie

Thank you... I thought the same but, have gone with it for now... lets see how i get on...

My next bloods is 26th June, then 26th July with a clinic appt around that time she wants to leave me be for 2 months...

Im going to give it until end of July and go from there...

Im still struggling to accept this anyways so tbh any sign of, it could be an error and almost over im going to hope for... but i doubt it very much. I just maybe think she hasnt got that much experience after all, despite what i had been told... 😔😔😔

[shaws in reply to PaulH1986]

I agree with SeasideSusie that your dose is too low. It comes as no surprise on this forum that few Endocrinologists have any idea of how best to return us to good health. They seem to be happy when the TSH is 'somewhere' in the range - even top which is around 5. They seem to know more about diabetes than hypo.

Too low a dose can backfire as well as our body cannot cope without thyroid hormones.

[greygoose in reply to PaulH1986]

she is concerned she will now put me into a hyperthyroid state, as the numbers have dropped so quickly...

She means your TSH has dropped quickly? That's what it's supposed to do. How long did she think it was going to take? But if she means your Frees have dropped (don't remember your last labs) then that's driving you hypo, not hyper. You can only be in a hyperthyroid state - i.e. over-medicated - if your FT3 is over-range. And yours is a long way off that!

she thinks they had an effect on my numbers, as some products contained soy isolate proteins...

What sort of effect? The soy could have made you hypo, if you took enough of it, but you would have got over it by now, if it was that causing you to be hypo. But you're still hypo, even with 100 mcg levo, according to those results. So, while soy might have some effect at a cellular level, I very much doubt if it had anything to do with your numbers. I don't think she knows the first thing about thyroid.

[PaulH1986 in reply to greygoose]

Tbh im really struggling to make heads nor tail of this whole situation, Im struggling to accept it myself anyways and tue consultant just messing me around is making me think otherwise...

[greygoose in reply to PaulH1986]

Yes, she sounds like she might confuse things. I honestly think they just make it all up as they go along.

There's nothing out of the ordinary with becoming hypo, it happens to so many of us - more and more, in fact - and unless you have Hashi's, very few people find out why they're hypo. Trying to pin it on the energy drinks is a little pathetic, I think. It's not like being bottle fed on soy formula. But even so, that was then, this is now, and you're still hypo, so I don't see how reducing your dose like that, is going to help anything. I think you need a new endo.

[PaulH1986 in reply to greygoose]

I think you might be right but i have to stick with it for a little while and just see how things go...

Ive got to give atleast 6 months run hopefullu things will get better...

I guess my real issue is I never felt any different to how i feel now before my diagnosis, so its really difficult for me to see how or where my endo is going wrong if at all?

[greygoose in reply to PaulH1986]

Your hypothyroidism doesn't start with your diagnosis. It's around for a long time before it gets bad enough to get you diagnosed. Some people just get used to their symptoms and consider them normal - I know I did.

But, your endo is going wrong in the rubbish she talks! None of it makes any sense.

[shaws]

I am not saying my experience is the same as yours but I had constant palpitations on levo. Not one doctor or specialist (cardiologist) could figure out what was going on and I had to call the ambulance a number of times, even at work etc my heart would burst into activity at any time, day, during the night etc. I had heart monitors etc etc and no problems were detected.

I, eventually, found out myself that it was levothyroxine (T4) that was causing mine because when liothyronine (T3) was added heart calmed somewhat. Eventually when I took T3 alone I have had no palpitations whatsoever. So, my guess is that some bodies do not like synthetic levothyroxine (T4) as it has to convert to liothyronine (T3). T3 is the only active thyroid hormone which is required in our millions of T3 receptor cells. T4 is inactive and has to convert to T3.

Many members also source their own NDT (natural dessicated thyroid hormones) which used to be prescribed but now forbidden. T3 has also now been withdrawn due to exorbitant costs by greedy pharma companies (it seems to me).

You could also try an experiment (not sure if it will work as I didn't do this) by taking one anti-histamine tablet on hour before taking levothyroxine. If you have no reaction it could be the fillers/binders in it could be causing palps.

As you are quite newly diagnosed with increases, your TSH should reduce to 1 or lower. Many Endos believe that a low TSH will give us heart problems but it wont (unless restricted and we don't eventually get to an optimum dose i.e. (we feel well with no symptoms) .

Blood tests should be at the earliest possible, fasting, you can drink water and allow a gap of 24 hours between your dose of levo and the test. This helps keep the TSH at its highest and prevents an unnecessary reduction. Levo should be taken on an empty stomach with one full glass of water.

Ask GP to also check B12, Vit D, iron, ferritin and folate. Everything has to be optimal.

[PaulH1986 in reply to shaws]

Thanks Shaws, for now im going to go with what she has givem me, I will soon know if i feel rubbish, and when i see her next she (the endo) will know too...

Thanks for the advice though, i just dont think any amount of getting through to her will make any difference... 😔

[healthymarge in reply to shaws]

My TSH was 0.26 so GP told me to reduce from 100 Levo to 75

[shaws in reply to healthymarge]

That's the problem as well - the keep adjusting dose according to the TSH and not our symptoms. If you begin to feel worse, phone and tell her your raising your dose again as you are symptomatic. I don't know if she'll understand 'symptomatic' as they believe lies that a very low TSH will give us a heart attack - more probably get one without enough.

healthunlocked.com/thyroidu...

[shaws in reply to shaws]

and:

healthunlocked.com/thyroidu...

[healthymarge in reply to shaws]

😊I'm lucky that I buy my Levo over the counter in Spain so have a stash of all strengths and adjust according to how I feel😊 We are not trusted in Ireland to get our meds without prescription. Also in Spain you can buy cholesterol and BP meds without any problem. You even have to ask for supposotories here whereas in N. Ireland you can buy them over the counter! Rant over!!!

[shaws in reply to healthymarge]

It is great when we can have the responsibility ourselves and have the freedom to adjust how we feel.

[healthymarge in reply to shaws]

Thanks for all the posts. They are so informative😊

[humanbean]

Do you know what the TSH is of people who have no known thyroid disease and are negative for TPO antibodies? i.e. what the TSH is of healthy people?

You might find this post of some interest :

healthunlocked.com/thyroidu...

Note that the graph is based on female results, but the result for TSH in men is only a tiny bit higher, as the table shows.

[PaulH1986 in reply to humanbean]

I have saved those images, im going to ask her about it in due course when i see her next...