Starting to struggle. Advice please!: Hi. Summary... - Thyroid UK

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Starting to struggle. Advice please!

patez profile image
12 Replies

Hi.

Summary 1st for those who do not know me. Based on symptoms and a bit of a wonky/confusing thyroid test (TSH 1.55 (range 0.30-4.5, FT3 2.62 (range 1.40-4.18), FT4 11.39 (range 8.90-17.20), I have been variously diagnosed with hyperthyroidism (local doc), euthyroid, and central hypothyroidism. From advice I received from you wonderful people, it is very obviously not hyper. After other advice, and a lot of my own research, I decided that a trial to treat central hypo was in order!

I am into my 5th week of Thyroid-S, starting on 1/4 grain for 2 weeks, and increasing 1/4 grain every 2 weeks. At 1st I felt great, feeling very calm and relaxed, with BP and heart rate greatly improved from before starting treatment, heightened clarity of thought and better concentration, able to walk easier, not shaking and shivering inside.

I increased my dose to 3/4 grain 7 days ago, and I have been on a slippery downhill slope since then!

BP (both systolic and diastolic) have gone up steadily (still not too bad at 152/88), so I have not gone hyper? Resting heart rate has also gone up very slightly. Temp is steady at around 36. But I now feel really nervous and fluctuate from feeling cold to feeling hot! Feet are really cold, but face/hands feel hot. Sweaty palms and "rotting" fingertips also?

I would like to ask your opinion if I am maybe increasing too fast? Should I go back to 1/2 grain, and if so, how long should I stay on 1/2 grain before attempting the increase to 3/4 grain?

Thanks again for any advice.

Patez

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greygoose profile image
greygoose

I don't think you're increasing too fast, but I do think you've probably gone too far.

But, I don't understand why you think that blood test was 'wonky'. It looks euthyroid, to me - obviously not hyper, but not hypo, either. But, did you get your antibodies tested?

patez profile image
patez in reply togreygoose

Hi.

TPO was 0.27 (ref range <5.6), TPaG ,10.00 (range <115).

Vit D 74.9 (sufficiency 30-100).

Folic 14.01 (range 1.6-18.7)

Doc immediately diagnosed me as hyperthyroid and prescribed carbimazole, but I was dubious about that and asked on here before I took any.

Someone else on here then suggested central hypothyroidism, which does tie in with this quote from NCBI (Fatigue and peripheral edema are the most specific clinical features. Diagnosis is established by the presence of normal to low-normal TSH on the background of low-normal thyroid hormones).

I do suffer with peripheral edema (swollen feet and hands and arms) and the associated "unexplained" weight gain. Fatigue, brain fog, poor memory, loss of coordination, balance problems (not dizziness), feeling shivery inside (but hot and sweaty), nervous.

I do suffer with anxiety and panic attacks (treated with 0.5mg clonazepam), and diagnosed mild bipolar (no treatment). Interestingly, the psych was the one who suggested a thyroid problem, based on symptoms. I also suffer with essential tremor (diagnosed as not Parkinson's), treated with propranolol.

Dropped back to 1/2 grain NDT today, and feel a lot better already!

Could it be that 1/2 grain is my "target"?

Thanks again for all your help and support.

greygoose profile image
greygoose in reply topatez

You cannot diagnose hypo by symptoms alone, because they are non-specific - i.e. could be caused by so many other things. I do know about Central Hypo, but it wouldn't have occurred to me because your Frees aren't that low. And the TSH level corresponds to the Free levels. Your antibodies are very low and do not suggest a problem.

So, taking half a grain, if it makes you well, should be ok. But, keep a strict eye on your levels. Too much is as bad as too little.

patez profile image
patez in reply togreygoose

Hi.

That is an interesting reply.

I have had a personal reply from another member, which suggests that the combination of T3 and T4 in the NDT may have caused RT3?

It ties in with my "adverse" reaction to taking NDT? BP and heart rate increased when I increased my dose!

You are obviously very knowledgeable about all this, and you say that you are familiar with central hypothyroidism, so I will ask the question?

Could it be that the T4 is causing RT3, and if so, what would be my course of action?

Possibly take T3 only?

I know that I am asking questions which may not be relevant!

What is your knowledge of possible anterior hypothyroidism?

I do realise that my TSH levels are not low enough to suggest that, but I am open to any answers!

The very fact that an awful lot of my symptoms have resolved since initially starting NDT is an indicator of some sort of a thyroid problem, but what type of thyroidism? Central, anterior?

NDT seems to have "pushed me" to being hyper, when I got to 3/4 grain?

Your opinion is important to me, because you are obviously very knowledgeable.

Patez

greygoose profile image
greygoose in reply topatez

I have had a personal reply from another member, which suggests that the combination of T3 and T4 in the NDT may have caused RT3?

No. That theory doesn't hold water. High FT4 can be the cause of high rT3 - there are many others - but, given that taking T3 lowers FT4, there's no reason why just taking NDT would cause high rT3. Unless, of course, you took an awful lot of it. But, your FT4 is low, so it is not the cause of your high rT3.

And, high rT3 would not cause increased BP and heart rate, anyway. It doesn't cause anything. It is inert.

And, taking T3 only is not a 'cure' for high rT3 - if, in deed, any cure is necessary. Obviously if there is no T4, there is no rT3 either, but taking T3 will not get rid of the actual cause of your high rT3, the root cause will still be there, and you need to find it.

Anterior hypothyroidism? You mean Secondary hypo? Secondary Hypo is when there is a problem with the pituitary. For some reason, it doesn't produce enough TSH to stimulate the thyroid to make enough thyroid hormone. But, your TSH reflects the levels on your Frees. It would only be if your Frees dropped, over time, and your TSH stayed the same, that one would suspect a pituitary problem.

NDT seems to have "pushed me" to being hyper, when I got to 3/4 grain?

NDT cannot 'push you' into hyperthyroidism. It does not directly affect the thyroid gland. But, if you mean it made you over-medicated, then you really need labs redone to find out. :)

patez profile image
patez in reply togreygoose

Thank you for clearing that up.

Much appreciated.

greygoose profile image
greygoose in reply topatez

You're welcome. :)

patez profile image
patez in reply togreygoose

Hi.

I do trust you, so I will ask you a direct question, which is bothering me? I am taking a very low dose of NDT. I have noticed a very significant improvement in my symptoms, on only 1/4 grain NDT though.

Is it possible that 1/4 grain is enough?

helvella profile image
helvellaAdministrator in reply topatez

I have had a personal reply from another member, which suggests that the combination of T3 and T4 in the NDT may have caused RT3?

Although there are undoubtedly reasons for private messages, in general it is preferable for advice to be on the forum so that it can be discussed. If I post something and get it wrong, someone else might notice and tell me (and everyone else!) And the "wrong" could be a simple typo or my complete failure to understand.

Nanaedake profile image
Nanaedake

From the thyroid results you give above, it doesn't look like you've got a thyroid condition. As Greygoose suggests, you need antibodies testing to rule out a thyroid condition. You really don't want to take any kind of thyroid hormone if you don't need it.

sarosent profile image
sarosent

Hi Patez, I was going to say get your ferritin checked to see if it is too low, but I see from previous post it was high.

So I have no advice, but wanted to say I hope you find some answers!

patez profile image
patez in reply tosarosent

Hi.

Yeah I am looking for answers!

Doc says hyper, forum says no, my research says central hypo!

I am lost and suffering!

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