Urgent call from GP

[Snevey]

My GP just called me and told me to stop taking all thyroid meds for 3 weeks to "reset" my thyroid (TSH) levels. He was petrified that my TSH was 0.01. I asked him to run the other labs as well and they returned like this:

--------

TSH 0.01 (Range .4-4.5 mlU/L)

Phyroid Peroxidase Antibodies 292 (Range <9IU/mL)

T3, Free 5.3 (Range 2.3-4.2 pg/mL)

T3, Reverse 19 (Range 8-25 ng/dL)

T4, Free 1.5 (Range 0.8-1.8 ng/dL)

He's instructed me to immediately cease all thyroid meds. I was taking 4 grains of Nature Throid and (2 grains twice a day). He sent me to get my labs immediately after my afternoon dose of NDT, which I really believed skewed those numbers. I know TSH will suppress on NDT and was totally expecting that. He told me that once I suppress TSH, it'll never come back? I've never heard that.

So now I need to find another GP or holistic dr, or even an endo in the York, PA USA area, which is tough.

I haven't felt this good in years after I switched myself from 137 mcg of levothryoxin and 5 mcg of cytomel (that's what my endo did to me)...

Now I don't know where I can get Nature-Throid. I don't know whether to do as he suggests and cease all thyroid doses to "reset" and test again? I have Hashimoto's disease, so I really don't want to stop treating my thyroid! What would you do? This has been the only Dr that has worked with me to use NDT. He didn't like where I was sourcing my NDT (online pharmacy).

Could a couple folks suggest via a private message where you source your NDT? I wouldn't mind trying Armour or the other NDT's as Nature-Throid seems to be on backorder. Also, feel free to comment your opinion on my next steps, perhaps without my GP....

[Snevey]

By the way, I started at 2 grains of NDT, and ordered my own labs to test my thyroid. I'm not just blindly loading myself with NDT. The DR says I'm "extremely hyperthyroid" now, but have ZERO symptoms of being HYPERTHYROID. What started me on this quest many months ago was my endo had me on 137 mcg of levo and I felt like sh!t! And she tested my reverse T3 and it was high, as I was a bad converter of T4 to T3. That's why she threw a whopping 5 mcg of T3 at me and told me that 5mcg of T3 was a dangerously high dose...

[Clutter in reply to Snevey]

Snevey,

I wonder if these doctors realise how ridiculous their ignorant assertions make them seem. 5mcg T3 is equivalent to 15mcg Levothyroxine. You'd think it was crack cocaine the way some of them go on about it.

[jgelliss in reply to Clutter]

Clutter

You said so very WELL . Do Dr's really know what their doing ? I wonder . Forums like ours are so important that we can bounce off each other questions and get great answers . We come to this forum to be and get empowered .

[diogenes Remembering]

Here we have another doctor who thinks one can stop and start thyroid medication as hard and a drastically as one pleases. Even if you are mildly overdosed, the proper way forward is to gently lower it, not suddenly withdraw altogether. That is asking for real trouble, because it will upset and shock your system so much that getting back on track will be very difficult.

[shaws in reply to diogenes]

I am so glad, diogenes, that someone has sense rather than the nonsense that Endos and most doctors 'assumptions' with regard to results when on replacement hormones.

Why do they never read research or listen to their patients. We don't want to dislike our doctors but we instinctively (especially if not improving) sense that something is seriously wrong in their training particularly now that they have removed T3 as they did with NDT a few years ago.

[jgelliss in reply to diogenes]

diogenes

Granted you are right . If lowering is needed it or raising the best is to go low and slow . So our bodies can acclimate to the new changes . But sometimes labs can be a bit over and the patient being fine . Only to be scolded by the Dr that your labs are over your TSH is almost kneel . Now we all know that labs can be skewed . Who do you believe some labs or your body that tells you through symptoms if your over or not . I say trust yourself your body and symptoms won't lie to you . But labs are iffy and skewed .I found that the Dr's who know the least put the most fear into patients . By the way any T3 will suppress our TSH . Not to worry .

[diogenes Remembering in reply to jgelliss]

One needs to be careful in this. Feeling fine is not the same as being fine. In the past some patients were given up to 400 ug T4 and were in outer space. They loved their situation, but it wasn't really healthy in either the long or medium term.

[jgelliss in reply to diogenes]

My apologies .I stand corrected . You are certainly right Diogenes . I should have worded it correctly as Being fine . Thank you .

[Hillwoman in reply to diogenes]

diogenes , I have great respect for your views, but your comments here worry me. They seem to reinforce views expressed by medics elsewhere on the internet, and in clinical practice, that thyroid patients who self-medicate are in thrall to an addictive drug. The 400 ug T4 regimen you refer to may actually have been needed by some patients, but I can't really see how they found the effects of a replacement hormone euphoric. I require a supraphysiological dose of T3 for probable insensitivity to TH (exactly where the block is, I do not know), but when one is overmedicated with either T4 or T3, the effects are very unpleasant indeed.

[diogenes Remembering in reply to Hillwoman]

Well in the olden days (mid 70's to 80's), patients were often demanding higher and higher amounts of T4 because it "made them feel so good". Feeling good is not necessarily the same as being good. It isn't responsible to give someone so much T4 for that reason alone - long term damage can often result. A patient has to be restored to as close to their individual needs pattern as possible and not something else however superficially attractive it may be.

[Hillwoman in reply to diogenes]

I'm still rather baffled by this. Is it not possible that some patients could convert T4 relatively well, but struggle to take up T3 at cellular level? I understand that it still is not possible to detect this directly, except in the few unfortunate families who suffer the specific gene mutations leading to thyroid hormone resistance.

Individual patterns of optimal health, in terms of T4 and T3 serum levels, are difficult to establish after the fact. I understood this to be the reason you advocate establishing individual baseline levels in childhood?

In my own case, an acquired form of cellular resistance to T3 could only be inferred (though I haven't been referred to the specialist unit at Addenbrooke's) from the specific end-stage signs and symptoms that persisted on T4, and subsequently on an average full replacement dose of T3. I was very lucky to be under the supervision of two doctors who had experience of exactly this problem, and who both recommended a slow increase in liothyronine dose above 100 mcg. Basal pulse, blood pressure and temperature rose to more normal levels, and palpitations ceased. I have to be alert to an occasional 'blip', also to seasonal changes in ambient temperature, and adjust carefully.

[diogenes Remembering in reply to Hillwoman]

No, it was simply in those days a time when it wasn't properly realised that T4 just as T3 is not to be taken lightly as if any old dose however high would do. The people who were "high" on T4 were so because they were good enough converters to have elevated FT3 as well - ie overdosed. Being "hyper" with high T3 from T4 is not necessarily the same as being truly hyper - people can feel great but their bodies are being subject to too much stimulation for their own good.

[Stourie in reply to diogenes]

Before t4 was "invented" people were given ndt until they felt good. No blood tests then. Too much dependence is given to them. No worries about being good but just feeling good. They were better treated then as opposed to now. Feeling good is really important to having a decent life and not just coping miserably.

[Hillwoman in reply to diogenes]

I'm not sure how one would distinguish objectively between these two states, other than by monitoring BP, basal pulse and temperature, and regular bone density scans.

[Stourie in reply to Hillwoman]

I do think that if you feel good then the other is fine. If overmedicated then you would know all about it. x

[Clutter]

Snevey,

Your GP doesn't know much and is panicking unnecessarily. There's no need to stop taking NDT because TSH is suppressed. FT4 isn't high so it's unlikely that FT3 is normally high. Your FT3 result is high because you took NDT before your blood test and the T3 was peaking and has skewed the result. It would have been better to refuse to have the blood test until the next morning before you took NDT.

TSH is suppressed because your FT4 and FT3 are good so TSH stimulation isn't needed to produce more hormone.

If your GP thinks suppressed TSH will never come back what is the point in stopping NDT to reset TSH?

My TSH has been <0.01 for 5+ years apart from 3 occasions when I had to stop thyroid replacement for 4 weeks. TSH rose to 107.5 on one occasion so it does recover. My endo would prefer my TSH less suppressed at around 0.05 but I refused further dose reductions after 3 reductions didn't budge TSH.

If your GP doesn't like you sourcing NDT online he should write you a prescription. There is currently a shortage of NatureThroid so you may need to access an alternative brand until RLC have restocked suppliers. They have started shipping 1 grain tablets and other doses should follow in due course.

Armour is the most expensive NDT. Acella NP has had good press.

[shaws]

Your test after taking NDT would have skewed your results. So ignore him.

Your statement :- "I haven't felt this good in years after I switched myself from 137 mcg of levothryoxin and 5 mcg of cytomel" speaks volumes so I would follow what I know is best for me.

[Snevey]

My trouble is now sourcing NDT... One online vendor doesn't ship to the USA, and the other is out of everything until early December. This is going to get frustrating...

[jgelliss]

Hello Snevey

So sorry with your diagnosis . It is curable and you've come to the very best forum to navigate your thyroid journey . I was on Naturthroid and as you very well know it's on back order . I'm thinking of switching to Acella NP . I heard nice things about it .

Wishing you much success with your steps .

[Snevey in reply to jgelliss]

I'm looking for a place to purchase Acella NP online, but can not locate one. Perhaps if anyone has such a source, PM me those details.

[Stourie in reply to Snevey]

If you feel good then I wouldn't reduce anything. A slightly over range t3 isn't dangerous. Before blood tests I wonder what t3 results would have been if tested. They were given ndt until they felt good.

[Angel_of_the_North]

I really, really would not do that. It is very dangerous to stop thyroid meds completely and quite unnecessary. It sounds as though your doctor is out of his depth and about to make you very ill. I'd try to see a different doctor or just go it alone. Your free T3 is slightly over range. I would consider dropping the dose by half a grain and see how you go. TSH is not important.