Who is up for solving this thyroid/perimenopaus... - Thyroid UK

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Who is up for solving this thyroid/perimenopausal puzzle?! I desperately need some help! 🙏🏻

mindyhoward10 profile image
28 Replies

I have Hashimotos which was diagnosed about 5 years ago. I started on Levo and after increasing my dosage, I felt worse. A friend of mine with Hashimotos suggested that I probably was not converting T4 to T3 and could try to take NDT because of the T3 in it. Luckily I found a doctor who prescribed it and have been steadily taking 150 mcg of NDT ERFA for 5 years with no problems until 2 months ago.

2 months ago, after taking my medication, I would start to notice a build up different reactions which got progressively worse over a three week period having (excruciating headaches, stomach issues, dizziness, brain fog, diarrhea and feeling weak). It felt like I was having hyperthyroid symptoms and maybe taking too much hormone. I stopped taking ERFA for 3 weeks and the side effects all stopped after that.

(I spoke to the ERFA manufacturer and asked them if anything had changed in their formula because this new batch I was taking tasted differently to me (normally there was never a flavor, and with this batch, it tasted a fake peach flavor). They, of course, said that their pills have been quality checked and they have had no complaints but there can be variability in the pills because it’s coming from animal sources so it can smell and taste differently on occasion). But up until now they have had no other complaints about this batch).

At that time when I stopped taking ERFA I got a blood test which showed:

TSH - <.01 (.27-4.2)

Free T4- 14.1 (10-26)

Total T3- 1.2 (1.3-3.1)

My doctor and I agreed that I was not overmedicating myself because these numbers were pretty decent. (My TSH has been <.01 for the last 4 years but Dr. Richard Shames, thyroid guru, and best selling author, told me in a consultation that if my T4 and T3 are within range and I am feeling good, that the TSH being so low is not really important as an indicator. It’s more important about how you feel and not to be worried too much about the TSH). In the meantime, we were thinking of alternatives to try and thought about trying synthetic thyroid pills again.

We figured out that my NDT ERFA dosage equivalent is about 98 mcg of T4 and about 24 mcg of T3. Instead of taking both T4 and T3 pills separately and trying to make adjustments to both at the same time, my doctor and I thought let’s first get one pill’s dosage correct and then add the second pill. I initially tried a cytomel T3 pill of 12.5 mcg, (thinking I was starting slow and taking half of what I normally had in my NDT dosage) and had a bad reaction on that first time. Then stopped taking that pill right away because the reaction was so heavy. But I didn’t know if the reaction was coming from the pill itself, the dosage, or the fact that i took it without the T4 pill.

Then we tried a new tactic. I tried to take Tirosint and on the first day it didn’t feel good at all. Then we tried for 3 weeks Euthyrox T4 and initially i started on on 88 mcg pill. On the 5th day I felt weird with a bad reaction- headache, and brain fog. I lowered my medication to every other day and took 44 mcg for the next 2 weeks. I saw my weight creeping up from 58 kg to 61 kg and didn’t feel that great at the end of the 2 weeks (I felt like I was getting weaker and had less energy and was freaked out about my weight gain- 3 kgs in 3 weeks 😱). After a blood test it showed :

TSH - 7.4 (.27-4.2)

Free T4- 13.3 (10-26)

Total T3- .8 (1.3-3.1)

My body is obviously not converting T4 to T3. And the lack of T3 was making things worse for me.

Then I started taking only 5 mcg. Of Cytomel- T3 for 4 days. On the 5th day I had a bad reaction with brain fog and stomach issues. I stopped taking the low dosage Cytomel.

Then because I am freaked out that I have to do something to get things under control, I started taking my old NDT that I suspect is from a bad batch but only one 30 mcg pill (1/5 of the dosage that I had been taking for years). On the 5th day I had a bad headache and some brain fog. I don’t know where to go from here. I think this is a bad batch but wonder if maybe I can’t tolerate any thyroid pills?

Lastly, to make things more complicated, I am also peri- menopausal and I know my estrogen and progesterone are also dropping because I am having hot flashes so all of my hormones are playing havoc and probably affecting one another.

(The new batch of Erfa NDT won’t be ready until end of September which is another month from now. I would like to try to see if I get the same reaction with a new batch of Erfa.)

Any advice as to where to go from here for those interested in a real puzzle? I know I haven’t tried the other NDT brands yet, but was maybe wondering if there was any way to figure things out using the Synthetic hormones and if not- what would be your next step to try?

Many thanks!!

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28 Replies
greygoose profile image
greygoose

Don't have time to go into this in detail right now, but one thing jumps out at me:

TSH - 7.4 (.27-4.2)

Free T4- 13.3 (10-26)

Total T3- .8 (1.3-3.1)

My body is obviously not converting T4 to T3. And the lack of T3 was making things worse for me.

No way can you conclude from these results that you aren't converting because Total T3 isn't even the right test. You need a Free T3 if you're going to learn anything about your thyroid status. All that these results show is that you are grossly uder-medicated. :)

mindyhoward10 profile image
mindyhoward10 in reply to greygoose

You and Lalatoot are both correct... Here in the Netherlands, we can't get Free T3 tested unless we get a doctor who lets us test it via a lab in Germany. At the moment, I don't have a doctor that I can ask to do that. But I know that from earlier testing from 5 years ago. Given that, any new advice?

greygoose profile image
greygoose in reply to mindyhoward10

Sorry, but what have you given me? Nothing. Even if you'd put the result in, it would be 5 years old, so of little use now. Besides, if you're taking T3, there's no way you can tell how well you convert.

mindyhoward10 profile image
mindyhoward10 in reply to greygoose

But the second test was taken after only taking Euthyrox (T4) for 3,5 weeks and you can really see the T3 level dropping faster than the T4.

greygoose profile image
greygoose in reply to mindyhoward10

No, you can't see anything because TT3 is not the right test. Your TT3 could be low but your FT3 reasonable.

To be able to establish conversion rate, you compare FT4 with FT3 - like with like. You can't compare and FT4 with an TT3, they are not the same.

mindyhoward10 profile image
mindyhoward10 in reply to greygoose

Ah ok- good to know... now only to figure out how I can get a Free T3 test here in this backward country...

greygoose profile image
greygoose in reply to mindyhoward10

If it's any cosolation, all countries are backward when it comes to thyroid. None of them want to test FT3 - probably because none of them understand it. All doctors have very limited education in thyroid.

If you start supplementing with vit D, you must also take magnesium and vit K2-MK7.

mindyhoward10 profile image
mindyhoward10 in reply to greygoose

Because? And how much vitamin D and in which form would you say? Same with Mg. And K2- MK7?

mindyhoward10 profile image
mindyhoward10 in reply to mindyhoward10

Interestingly enough, when I went to get my blood test, the nurse asked me if I was taking blood thinners because I wasn’t stopping bleeding quickly enough. And I just had a bloody nose and it took a long time to stop... time for some Vit K!

greygoose profile image
greygoose in reply to mindyhoward10

OK, so where was I...

I stopped taking ERFA for 3 weeks and the side effects all stopped after that.

That is a perfectly normal reaction, and has nothing to do with whether erfa or the fillers, or anything to do with the actual pill, suits you. That happens on all forms of thyroid hormone replacement. You stop taking it and you feel better than you have for a long while. But, unfortunately, it doesn't last. Sooner or later, the hypo symptoms will come creeping back in.

Seems to me, there's been an awful lot of chopping and changing of dose and type of thyroid hormone replacement. And, that won't be helping you. You are now severly hypo so, it could be that your nutrient levels have dropped. So, that would be the first step: get those tested. If they are low, you will have difficulty taking T3 and NDT.

Then, try and get hold of different brands to see if you can find one that suits you. Because different brands have different fillers, and it could be one of the fillers that is disagreeing with you. Yes, it could be that you had a bad batch of Erfa - did you try asking on different forums if other people had had problems with that particular batch? You'll know more when you get your new batch in September. Which isn't far off, actually! So - and this might be contraversial - if you can't find anything that does suit you, it wouldn't hurt you too much to stay off thyroid hormone until the Erfa arrives.

mindyhoward10 profile image
mindyhoward10 in reply to greygoose

First of all, I want to say thank you for the time that you have spent answering this post. I really appreciate someone to talk to about all of this because my GP has no clue and I thought I had it all figured out until about 6 weeks ago. As far as the vitamins/minerals that have been tested, they were all in the middle of the ranges- Iron, ferritine, vitamin B12 and folic acid, so I think that is not the issue. However, I did have also the Ertrocytes be a bit too high the MCV and MCH be a bit too low. I don’t know if that’s an indication of something. Once again thanks.

Ps this morning I went back to my Euthyrox pill of 88mcg and 5 mcg of Cytomel. Now I am trying them together. I feel like I need to try and take them as much as possible (if I can without trying to get the side effects)until I can get my hands on the new Erfa. But I know I will be undermedicating myself. Until I can figure out dosages I can tolerate. It would be nice to get my hands on other thyroid pills to compare and contrast..

greygoose profile image
greygoose in reply to mindyhoward10

Yes, that would be ideal, if it's possible. But, I know how difficult that can be.

However, I did have also the Ertrocytes be a bit too high the MCV and MCH be a bit too low. I don’t know if that’s an indication of something.

I'm not an expert on blood, but that sounds as if you might be a bit anemic to me. Possibly mid-range for iron and ferritin isn't high enough for you.

And, how about vit D?

mindyhoward10 profile image
mindyhoward10 in reply to greygoose

Vitamin D total was 62 (50- 150)

greygoose profile image
greygoose in reply to mindyhoward10

That's low. It should be about 100.

mindyhoward10 profile image
mindyhoward10 in reply to greygoose

So should I take d3 or D2 pils? And how much per day would you say?

greygoose profile image
greygoose in reply to mindyhoward10

D3, for sure. I can't tell you how much - I'm not that well up on vit D - but you could try Googling NHS vit d guidelines, see if that helps.

Lalatoot profile image
Lalatoot

I was about to say the same as Greygoose. The testing is wrong. You need TSH, FT4 and FT3. Testing total t3 does not tell you about conversion.

mindyhoward10 profile image
mindyhoward10 in reply to Lalatoot

You and Greygoose are both correct... Here in the Netherlands, we can't get Free T3 tested unless we get a doctor who lets us test it via a lab in Germany. At the moment, I don't have a doctor that I can ask to do that. But I know that from earlier testing from 5 years ago. Given that, any new advice?

SlowDragon profile image
SlowDragonAdministrator

TSH - 7.4 (.27-4.2)

Free T4- 13.3 (10-26)

Total T3- .8 (1.3-3.1)

These results show you needed dose increase in levothyroxine

Ft4 far too low in range

Aiming to increase dose levothyroxine slowly upwards in 25mcg steps until Ft4 is in top 1/3-1/4 of range ....typically at least 70% ...sometimes higher

Essential to regularly retest vitamin D, folate, ferritin and B12

These need to be optimal for good conversion of Ft4 to Ft3

What vitamin supplements are you currently taking

mindyhoward10 profile image
mindyhoward10 in reply to SlowDragon

I am only taking B12 and folium. I just picked up though selenium and zink pills which I would like to start taking although I can’t get those things measured here.

mindyhoward10 profile image
mindyhoward10 in reply to mindyhoward10

Ps thanks so much for replying! Would you keep trying to increase Euthyrox (T4) even though it gives the side effects I mentioned above? And Cytomel? Just so I am now completely running on empty with no thyroid hormone in me? I am really starting to feel the effects of being Hypo. Or should I stop all medications that give any kinds of side effects?

mindyhoward10 profile image
mindyhoward10

I am taking B12 and folate pills. My vitamin D was low until I took a high dose cure of Vitamin D which was prescribed a few months ago. Now it’s ok. (For now). Based on info from 5 years back (free T3) I know I am not a good converter.

SlowDragon profile image
SlowDragonAdministrator in reply to mindyhoward10

Recommend you get all four vitamins retested alongside thyroid test when retesting after 6-8 weeks on next dose increase

mindyhoward10 profile image
mindyhoward10 in reply to SlowDragon

Will do thanks!

SlowDragon profile image
SlowDragonAdministrator in reply to mindyhoward10

Come back with new post once you get results

mindyhoward10 profile image
mindyhoward10 in reply to SlowDragon

Will do! One last question- Would you keep trying to increase Euthyrox (T4) even though it gives the side effects I mentioned above? And Cytomel? Just so I am now completely running on empty with no thyroid hormone in me? I am really starting to feel the effects of being Hypo. Or should I stop all medications that give any kinds of side effects? Thank so much for your time and willingness to help!

SlowDragon profile image
SlowDragonAdministrator in reply to mindyhoward10

Couldn’t say...what ever you decide to take you need to stick on unchanging dose for minimum of 6-8 weeks before retesting thyroid levels

mindyhoward10 profile image
mindyhoward10 in reply to SlowDragon

thanks- good to know... :)

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