What to do next? suppressed TSH but not enough ... - Thyroid UK

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What to do next? suppressed TSH but not enough T4 and T3

sue_b profile image
9 Replies

Hello folks, I am hoping that someone has an idea about what my current bloods mean.

My GP, who ran the tests, agreed she would monitor the affects of an increase in NDT, from 3 to 4 a day. I went hyper after a week or so on the new dose so I went back down to 3. She now wants me to go back on Levo 100mcg and test again.

Based on the years when I was still on Levo I never reached adequate T4 (this was at different surgeries) and my maximum dose was 125mcg. I have since discovered that I do have the DIO1 and DIO2 snp's which effect thyroid function/conversion to T3 . Not feeling great, however, might have just been because the dose was too small. All the relevant nutrients are good, although I do need to keep taking hydroxycobalamin (methylation issues) as my B12 seems to stay in the 200-300's ( about to get pernicious anaemia test). I did have a time when my cortisol was very high but blood tests now show it as normal. I am about to get the saliva tests done again to see what is going on with cortisol now.

My dilemma is, do I allow my GP to control this situation, see if she can get me to an adequate dose of Levo or do I try something else, no clue what? My last results were:

TSH 0.21 range 0.35 - 5.5 mu/L

FT4 9.0 range 11-23 pmol/L

FT3 3.0 range 3.5- 6.5 pmol/L

Thank you :-)

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9 Replies
SeasideSusie profile image
SeasideSusieRemembering

My understanding is that with NDT you should increase by a quarter grain at a time so you don't miss your 'sweet spot'. I imagine a GP has no experience of treating with NDT so wouldn't know that.

What dose are your current bloods on?

sue_b profile image
sue_b in reply to SeasideSusie

Hi SeasideSusie, thanks for your reply. My GP is just being helpful, first time I've ever come across that! My dose was 3 NDT. When I increased to 4 I went hyper after about a week. I was reading something earlier that said that T3 has a half-life of about 1 hour. Judging by the rapid return to normal when I missed a dose and then went back to 3 NDT, this seems to be the case.

So you are suggesting that I increase more slowly? Would that mean that I would adjust to the higher dose and could then increase some more, eventually arriving at 4 NDT a day? I don't think it is possible to split the 'grains' of my NDT but I could try taking them twice a week then 3 times a week etc gradually increasing.

SeasideSusie profile image
SeasideSusieRemembering in reply to sue_b

I don't take NDT so can't speak from experience, only what I've read. You need to take NDT daily, you can't only take them X number of times a week while finding your optimal dose.

If you're still taking Thiroyd then you should be able to cut them with a pill cutter, from pictures it appears to be a normal white tablet, not a hard, sugar coated tablet.

Information on dosing with NDT

tpauk.com/main/article/how-... > How to Dose with Natural Desiccated Porcine Thyroid Extract :

"...... After 3 to 4 weeks try adding just a quarter of a grain and see how you go from there. This is how many NDT users throughout the world have found what works best for them when increasing their dosage. You will probably only know where your sweet spot is when you do actually go over the top, because there is really no other way to find this out. I repeat there is nothing to be frightened about; the T3 in NDT leaves your body very quickly. Just try to relax until it has settled down."

tpauk.com/main/article/natu...

misslizzy.me/getting-starte...

"Finding the Optimal Dose

STTM says most of us end up needing between 3 – 5 grains (pills) to reach our optimal dose. For people its higher and for others its lower. There isn’t a one size fits all. Personally, at one stage I raised as high as 3 1/4 pills thinking I need a higher dose, but I had a bad hyperthyroid reaction which included extreme noise, site, sound and sensitivity, as well as, irritability and edginess. So I eased back to find 2.5 pills was my optimal dose. You and your doctor have to explore and try things according to your individual needs, and the removal of hypothyroid symptoms."

sue_b profile image
sue_b in reply to SeasideSusie

Gosh, you put that together quickly, thanks a lot, I'll have a look through it all. I don't have a pill cutter but I will have a go with a sharp knife in the interim. :-)

startagaingirl profile image
startagaingirl

HI- I am wondering what you mean by "went hyper". Since your ft3 is far, far too low, it is hard to see how 1 extra grain would send that over range. So what I suspect happened is that your TSH went below range, which certainly doesn't make you "hyper", unless this was assessed by another idiot doctor who simply doesn't understand thyroid issues. How were you feeling on 4 a day as opposed to 3? Did you have any extra symptoms?

On another point, that is a fairly substantial dose to be on whilst having such a low ft3 & ft4. Are you taking it on an empty stomach at least 2 hrs after or 1 hr before food and drink? Are you on any other meds that might interfere withn absorption, for instance acid control meds? Are you gluten free?

Gillian

sue_b profile image
sue_b

Hi there Gillian, thanks for your reply. What I mean by went hyper is that my resting pulse increased to 100 beats a minute and I was experiencing breathlessness going up the stairs and felt weak. Dr Tufts book mentions all of these as signs of hyper thyroid. The symptoms went away after I reduced the dose again, so the link seemed quite clear. Other general symptoms are no energy, memory very poor. Very rarely get hungry. Morning body temp, having increased from high 35 degree C to low 36 degree C when I switched to NDT, is now back down around 36 C. I am very overweight and a couch potato.

I have just been reading: drlowe.com/thyroidscience/h... about how your body metabolism set point can get lowered through eating insufficient calories. Your body responds to medications by lowering TSH as it is trying to keep you at the lowered set-point.

Perhaps my little 'hyper' state was my set point being overcome and maybe what SeasideSusie said about increasing slowly would allow my set-point to adjust more slowly and therefore meet less resistance in the form of hyper symptoms. That does fit with what a lot of people say about dose increases. The article I have linked to above says that my current set of bloods are usually seen when people are on a calorie restricted diet. My daughter keeps telling me I don't eat enough but of course, maintaining excess weight and not eating enough, do not go hand in hand as a rule!

I have just started being much more careful about when I take the NDT. I am now taking it either in the middle of the night, if i wake up or first thing in the morning, at least 30 mins before any food or drink. However, these changes are since that last blood test. I am not on acid control meds but I have been taking digestive enzymes and I was taking these at the same time as NDT. I haven't been gluten free but in the last few weeks I'd say I am 90% gluten free, only the occasional indulgence but getting less and less. I don't have celiac disease.

The only other change over the last 2 years is that my liver is being stressed by my latest medication, Rivaroxiban, which I am on 'for life' due to 2 lots of pulmonary embolism (both since starting NDT).

So, your thinking is, as I am taking NDT my TSH is suppressed but for some reason I may not be utilising the NDT? If that is the case, then perhaps the changes I have made will see an increase in FT4 and FT3 when I am next checked. I have just discovered a finger-prick thyroid function test which is very economical, so I may use that in-between my GP's tests.

Dr P. talks about thyroid patients being gym bunnies because that's what they need to keep thyroid function up. The other thing I am about to do is to get more active, consistently, within my limitations. I spend far too much time on the internet researching medical stuff!!

Sorry for being so long-winded :-)

greygoose profile image
greygoose in reply to sue_b

Sue, I'm not sure startagaingirl is going to see that response, because you didn't click on the 'reply' button.

But, you can't 'go hyper' because you are hypo, and the gland cannot suddenly start producing excess hormone to make you hyper. You can, on the other hand, be over-medicated. But, not in four days! It would be too soon to see any results. I think your problems were due to the fact that you increased by far too much and stressed out your body. Back-track to 3 grains and start again. And, it would be far, far better if you left an hour before eating, not just 30 mins. :)

sue_b profile image
sue_b in reply to greygoose

Ok, Greygoose, I'll give it another go. Thanks :-)

greygoose profile image
greygoose in reply to sue_b

You're welcome. :)

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