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[Floral]

You are right, hormonal imbalance somehow affects thyroid hormones, while thyroid itself continues to function properly. When I was in peri I had horrible insomnia, fatigue, anxiety and depression.  My thyroid test result came not looking good despite I never had any problems with thyroid in my life. That time I used Evegreen medical app and when my test results came on it there was explanation that something effected my thyroid hormones, but my thyroid itself was working fine. My estrogen wasn’t properly opposed by progesterone, in fact I was estrogen dominant, so after adding progesterone to my body, balance between hormones was restored and all the symptoms were gone, thyroid hormones were back to normal too.

Angel,  I so hope the progesterone will help me too!  Were you on Estrogen only?  Did you reduce your estrogen also?  Tk you for replying.

[Floral]

Joziel, it’s so darn tricky!!  Prob best to do one thing at a time.  Re the thyroid hormones would you be best to work with Dr M to guide you?

[AngelaH]

Angel,  I so hope the progesterone will help me too!  Were you on Estrogen only?  Did you reduce your estrogen also?  Tk you for replying.

I wasn’t on any type of HRT that time, because “estrogen dominance” is not recognised by NHS, so they don’t treat it until this condition becomes too dangerous to ignore it. Only progesterone was added to stop uncontrollable heavy bleedings, caused by a further drop of progesterone in peri, and suddenly for me it stopped the rest of my long list of symptoms, which I already had for decades, before my periods went through changes in peri. My own estrogen level remained sufficient enough to support all the functions to keep my body happy until I became menopausal, so that time I did not need additional estrogen at all.

To get right hormonal balance can be not so easy for some ladies, I wish you good luck with your treatment. 

[Floral]

That explains it thank you! Best wishes

[joziel]

Yes, I had (have?) endo (symptom-free at the moment) and was just stuck on desogestrel for over 10 years to suppress it. It sucked, I had zero libido, migraines and just felt flat. But I was too scared to come off because it kept the endo away.

Then I got hit by peri and low estrogen and started HRT and stopped the desogestrel and found that a hefty dose of utrogestan (300mg continuous) is keeping the endo away just as well, but allowing me to have my hormones back too. I could probably have done this 10 years ago and avoided taking desogestrel all that time, if only the NHS knew about natural progesterone...

Floral, so are your thyroid hormones okay now? Are you off thyroid meds? Did you start them, I can't remember? I'm a bit nervous to come off but think I might have built this up into some massive big deal here...  Yes I have an appointment with Dr Momi this coming Tuesday to see what he says about how to come off. I don't think he is very supportive of people trying to come off meds as usually thyroid patients can't, but I think I'm a different case...!

[Floral]

Joziel,  I am still on T meds, I’m on T4 62.5mcg, started at 50, Dr Momi tried me on v low dose of T3 which I do need but my headaches and anxiety were off the scale !!   So I tried extra 25 T4 and had to just add 12.5.  Then Covid hit last week so I’m not in a good place atm.  Think I have central hypo but prob is I will need T3 and worry how I’m going to take that.  It’s all pants and disrupts ones life so much!  Best of wishes for your upcoming apt x

[joziel]

That all sounds a bit rubbish I'm sorry Have you investigated high/low cortisol problems as that is a frequent reason people can't tolerate T3? Have you done a 4 point saliva cortisol test?

[Floral]

It’s horrid Joziel, I don’t know what’s going on.  Yes I had 4 point saliva cortisol tested in June and it was fine.  Bottom line I need T3 at some stage.

[pepperminty]

How are you finding it pepperminty? Are you on oral because you couldn't absorb transdermal?

Hi,

ok at the moment thanks. I started on prempac ( the GP and me at the time didn't know much about HRT and the GP still doesn't)-  Prempac didn't agree with me and then i was given femosten. I haven't tried transdermal yet . Too scared to change in case it all goes wrong . My job is stressful and while F works and I am healthy- don't drink /smoke/ not overweight, my risk is still low. Once I get to 60 I will consider changing to transdermal.  But as I understand it the risks of oral HRT are lower than if I drank and smoked and was obese.  I get on ok with the progesterone in F and wish they would re introduce it here again. But apparently Louise Newson said there is no commercial interest . I wish some high profile person would create some interest then !

PMXX

[joziel]

I agree, don't change if you've found something that works 

The problem with "commercial interest" is that capitalism is bollocks and drives the entire planet. It will be responsible for the end of the human race because it's behind global warming. Only things which make money are prioritised. And unfortunately there's no money in hormones. (There is in endless natural supplements and things that barely work but are heavily marketed.) Anyway don't get me started...

I might have just found something that works but it's 12 pumps of gel and a 50mcg patch which I don't think is very practical  Still, if all else fails I can come back to it  Hopefully Sandrena will save the day. Or maybe I just need a ton of patches.

[pepperminty]

I agree, don't change if you've found something that works 

The problem with "commercial interest" is that capitalism is bollocks and drives the entire planet. It will be responsible for the end of the human race because it's behind global warming. Only things which make money are prioritised. And unfortunately there's no money in hormones. (There is in endless natural supplements and things that barely work but are heavily marketed.) Anyway don't get me started...

I might have just found something that works but it's 12 pumps of gel and a 50mcg patch which I don't think is very practical  Still, if all else fails I can come back to it  Hopefully Sandrena will save the day. Or maybe I just need a ton of patches.

If men required hormones then I hazard a guess that there would be a whole smorgasbord of available options to try.    PMX

[joziel]

Thyroid-folks, I'm re-surrecting this thread...

So, this summer I came off thyroid meds. The dosage I was on just before coming off, was 50mcg T4 and 45mcg T3. I followed the advice of my thyroid doctor (who I hoped never to have to see again because I was going to be totally fine, right?) and halved the T4 to 25mcg and then reduced T3 by 5mcg every few days. When I was off all the T3, I stopped the T4. All this took about a month.

I then waited 6 weeks and tested. And got these results:

Blue Horizon venous draw (Platinum test)
Off all meds (6wks off)
TSH        2.38
free T3    2.6L (3.1-6.8 )
free T4    12.3 (12-22)
Total T4    64L (66-181)
rT3            17    (10-24)
Reverse T3 ratio 0.15

Thinking I just needed to give it longer, I waited another 4 weeks (so this is 10 weeks off meds) and tested again, this time with Lola Health (who use an NHS lab) and the results were exactly the same:

Lola Health venous draw
Off all meds (10wks off)
TSH        2.66
free T3    2.5L (3.1-6.
free T4    12.4 (12-22)

By this time, my hair was falling out in the shower. My feet were ice blocks at night. I could only sleep about 4 hours again. My metabolism had slowed right down and I was going to end up reducing my food intake and ending up back where I'd started. My skin was really dry. And on the same blood test my cortisol was high and my prolactin was also high. (Apparently both high E and hypothyroidism can cause that.)

Why is my TSH not going high to demand more thyroid hormone?! And why is my rT3 relatively high when all my thyroid hormones are so low?

I re-started 15mcg of T3 in 3x doses a day. And now I'm a bit lost. I was going to take this for 6 weeks - and then re-test and see my private thyroid doctor about it all, with all the results. But someone on FB has freaked me out by telling me it could be central hypothyroidism (ie caused by my pituitary or hypothalamus, not my thyroid) and I should go to my GP and get referred to an endo, and how I might need an MRI and all this scary stuff.

BUT - my GP (I think) is only going to test my TSH and free T4 and these will both look fine (as above). So she's not going to refer me, right?? Or can she still refer me? I can show her these blood results with T3 etc, but they are not NHS results. (Although they are done in an NHS lab.)

Just a reminder... Before ever going on thyroid meds last year, my results were pretty normal:

INUVI venous draw
On no meds

TSH        1.37        (0.270-4.2)
free T3    3.9        (3.1-6.
free T4    18.6        (12-22)
rT3            32            (8-31)

The issue was a low in range T3 and a high rT3. I was given a tiny dose of 15mcg of T3 to see if it helped, due to my severe night time symptoms (which I now think were estrogen related).

It didn't help but it sent my T4 below range (which is normal for T3) - and my old doctor freaked because she didn't realise it is normal for T4 to go below range on T3 only. So she insisted I start 50mcg of T4 and then my TSH got suppressed. I was only on thyroid meds for a year and my TSH was only suppressed for 7 months. Whilst on them, I did a reverse diet, got up to eating 2400 calories a day, high protein - and then, since the thyroid meds didn't help my night time symptoms, I weaned off them.

And now this...

I was thinking - oh no - I guess I just have to be on some amount of thyroid meds forever, then. And that was bad enough and needed some adjusting to. And now this person on FB (who is not in the UK) has freaked me out even more by telling me I need to go get scans and tests and MRIs on my pituitary done. Does anyone know about any of this?

Arrrgggg.. You think you've turned a corner with all this health crap and then there is the next thing.... Will there come a point where I am just living life again?

[AmandaJR]

Hi Joziel, I can’t answer this properly now as got guests in. But we’re in similar circumstances albeit from different starting angles.; you’re hypo and I’m hyper.
I’ve found an okay-ish Endo and we’re trying to kickstart my low TSH and zero T4 using anti thyroid meds to take my T3 down to bottom of the range- mine are standard T3 ranges of 3.6 to 6. 8.(standard NHSRanges)started. So we’re both trying to get my thyroid to produce it’s own, in range t3,t4 and TSH.

I’m 6 weeks into Anti thyroid meds, t3 has reduced from 40 to 8 so still over range. By next week my T3 will be at the low end of the range and likely give me hypo systems. In this 6 weeks my TSH hasn’t improved and my T4 is still zero.
My Endo has told me the once suppressed TSH could take 6 months to improve and another 6 months to get in lowest of ranges. Could it be that to need longer for the TSH to climb?

I’m concerned about what I’ll do next week when I’ve got very low T3, no T4 and TSH takes poss 6 months to perform. I think I’ve hypo systems now and some hyper thyroid ones remaining.

I’ll answer your Q’s tomorrow when guests have gone.

[SundayGirl]

Joziel please stop freaking out.

Before you start worrying about central hypo, have you ever had thyroid antibodies tested?

Looking at your results, before you took any thyroid meds your fT3 was low. Now your frees are both struggling.

TSH is a pituitary hormone that signals to your thyroid to produce more hormones. I think that's why someone has told you about central hypo as your TSH doesn't reflect your levels of frees. This could just be that it needs time to catch up after your body getting confused with the chopping and changing that's been going on.

Don't get hung up on reverse T3. It doesn't actually do anything to you and certainly doesn't block T3 from doing it's thing.

Looking at your latest results, I'm not surprised that you're having issues with hair loss, cold feet, terrible sleep, slow metabolism and dry skin. These are all typical hypo symptoms. Believe me, I've had them all and more 

Chin up girl. You will be well again. 

[bombsh3ll]

Sorry you're dealing with this.

I'm not particularly well versed in thyroid conditions but did have an empirical trial of T4 and T3 treatment myself whilst waiting for my pacemaker.

I do know that it can take months after stopping treatment for your own system to revert to baseline.

High cortisol can also suppress the HPT axis - if our cave dwelling sisters were facing a prolonged stressor such as famine they would want to shut down their metabolism to conserve precious calories.

You are unlikely to get any help from the NHS with this as your T4 and TSH are in range, and most GPs will not test T3 - they are strongly discouraged and it may not even be possible to select T3 as a test from the primary care dashboard.

This is due to the cost of T3 - the logic is if nobody is tested, nobody needs treatment.

I think the best person to seek advice from on this issue is the thyroid specialist who prescribed your treatment.

Either they can reassure you that central hypo is not a concern, and manage your hypothyroid symptoms, or they can recommend appropriate investigation - they may be able to write a letter to the NHS advocating for this if so, which can be really helpful.