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[CrispyChick]

Thanks Sunday girl. Much appreciated.

So my T3 and T4 are low??? I'll take a look at the symptom list.

Tired with no energy???. 1000% but so too is it an indicator of the ME/CFC they are now trying to diagnose me with. So too is it a symptom of the MCAS I think I have. So too is it a symptom of the PPPD dizziness I have been diagnosed with. Abd so it is it a symptom of peri. 

Honestly ladies. I'm at a loss.

I started this thread because I'm ready to pay to see someone - again! Because I've lost all quality of life now.

But I can't afford to follow mg thyroid, see Dr Paney and follow the MCAS...it's all so difficult. The NHS seems to have no where left to the me. 😞

Thanks for all your help. X

[SundayGirl]

Aw Crispy you need a big hug 

You do know that the things you mention can all be linked to thyroid too?
People have been known to get a ME/CFS diagnosis when it's a dodgy thyroid. Similar with the dizzy sensation and being hypo can also do weird stuff with your skin - not just dryness. ME/CFS is also a catch all diagnosis when they don't know what's wrong like an IBS diagnosis.

The thyroid isn't known as the engine of the body for nothing. It helps regulate everything.

[Mary G]

Crispy, it's good that you can eliminate Gilbert's Syndrome - the more you can rule out the better.

Re the thyroid, it sounds very complicated and I would have said your results looked normal but I know nothing about thyroid.  My sister is hypothyroid which she was told is caused by pregnancy but she has no idea if she is positive for antibodies. 

I'm tested for TSH, all the antibodies plus free and total T3 and T4 every year but it sounds that even that is not enough.  The doctor at the Gluck clinic said she likes to put women on thyroid medication if they are over 3 regardless because it means the thyroid is struggling.

It could be that you have subclinical hypothyroidism which is made worse by the menopause so it's definitely worth asking Professor Panay for his opinion. 

Thanks everyone for the helpful info.

[joziel]

Sunday, I'm not "fixated on rT3" anymore than I am "fixated" on any other thyroid result. The entire and complete thyroid panel needs to be done if you are starting out and diagnosing something. It doesn't need to be done every time, once things are stable.

As for "you've also been given very similar information as to rT3 being a red herring...." - sorry, that's just rude. You can give me all kinds of 'information', but the last time I checked there was freedom for us to decide which information to adopt and which not to. When there are multiple reputable doctors clearly stating that rt3 is an essential test, I'm not sure why you think I should believe the "information" people have given me here, over that? (BTW Crispy, look up the podcast called 'The Thyroid Fixer' by Dr Amie Hornaman. She also has a FB group you can join. You can also check out Dr Childs, including his many YouTube free videos on rT3 and thyroid stuff too. I was first prescribed T3 on the basis of my high rT3 result by Dr Conway at The Thyroid Clinic, which is an online clinic you can google. And I now see Dr Momi at Functional Thyroid Care - who I recommend more.)

I am not trying to "pick holes" in everything you say, Sunday, I am disagreeing with you. I'm sorry that's difficult for you, but I simply don't agree with some of the points you make.

"Yes, TSH should not be relied on as a monitoring tool in people with thyroid disease but is useful as a tool during diagnosis." Like everything else in a COMPLETE thyroid panel, TSH is just part of the picture. As you can see from my own set of results above with normal TSH and far below normal thyroid hormones.

Crispy, looking at your results, they are very unexceptional (in a good way) and are not really 'low' for someone not on thyroid medication. How to interpret a thyroid panel differs when someone is on meds and not on meds. Most people on meds need their T3 to be almost at the top of range to feel okay, for eg. That isn't the case for people not on medication. As said many times, there is nothing you can ask your NHS GP for. It is not up to him/her whether to test you or not, they are simply *not allowed* by the lab/NHS to order the relevant tests. Only consultants/endos can order those other tests. The only way you will get a complete thyroid panel is if you pay for it.

[CrispyChick]

Ok. Thanks folks.

Thanks for the hug Sunday girl.

I really don't know which way to turn. I've spent all day looking into MCAS. But I'm not sure on anything.

Perhaps Prof Paney is my best bet and he might cover all my tangents. 

[SundayGirl]

Joziel - you have your views and I have mine. That's ok. Fine. We should agree to disagree. Absolutely nothing wrong with that.

I'm sorry if you feel I was being rude. It's certainly not my intention. However I take exception to your very abrasive replies to anything I say. Once again, we can agree to disagree.

You think CrispyChick doesn't have a thyroid issue, I'm not convinced either way. It's possible that there's something wrong thyroid wise but it's also possible that the thyroid hormones are being downgraded, for want of a better word, so that the rest of her body can fight and recover from whatever else is going on. It's also possible that those numbers are correct and optimal for her.

You're correct in that interpretation of thyroid numbers differ depending on whether the person is taking replacement hormones or not and also whether it's a combination of replacement hormones the person is taking. But, it's the T4 that most hypos on mono therapy need to be higher than euthyroid people. (Something my Doctor recognises and fully agrees with as she is also hypo) That's because the thyroid gland also produces a small amount of T3 (alongside the T4 that is then converted to T3). In hypos, once taking thyroxine, the thyroid no longer produces hormones, or very minimal ones, so T4 needs to be higher to convert to similar amounts of T3 that euthyroid people have. Assuming mono therapy and no conversion issues 



This is CrispyChick's thread and I very much apologise to her for the way it's degenerated. 

[Borchesterlass]

I’ve seen Anne Henderson at the Amara Clinic in Kent . She’s very good and will do phone consultations I think .

[Pippa52]

https://rowenahealth.co.uk/. Menopause Specialist Clinic and she does really good online video or phone consults. Dr Sonnenberg.   She is brilliant very knowledgeable and approachable  regarding anything to do with menopause HRT etc - she has made a huge difference to me

[Pippi85]

Just to add that our thyroid is one of the first to be affected in peri and, as it’s the master hormone, it really does affect everything. I suspect all of ours are off.

I am currently following a thyroid supportive diet - main thing is I was under nourishing myself (intermittent fasting and keto over the years, becoming more restrictive with calories as weight became harder to lose - after 2 stone just falling off in early peri) so it’s about eating a lot more food than I’m used to, to let the brain know that nourishment is now available so that it switches away from the emergency high cortisol state and normal systems start to kick in again.

It can take a year to correct and I know I’m still struggling to burn glucose and not immediately store it due to ammonia still being excreted but I’m having some better days.

I have also just come down, exactly 28 days later, from having dosed some very high prog cream and Utrogestan. Interestingly, even oral Utro gets stored in the fat cells (the part that isn’t converted into pregnanolone) so keeps disrupting the HPA Axis as it continues being released into the blood. The cortisol leaps have finally stopped as it’s been quite scary feeling on high alert all the time. CHAT GPT said I would start to feel better 4-6 weeks later as takes that long to come out but there always seems to be a 28 day pattern, just like our cycles, which could be the equivalent of a Day 1 sudden fall of hormones even in post meno.

Anyway, sorry I’m rambling, but just to say that thyroid is worth a visit down the rabbit hole!

that's really interesting. were you on progesterone only hrt? I am currently on Cyclogest only and very worried about adding oestrogel in but I'm not sure if that's because I spend too much time on oestrogen dominance groups on FB I just don't know what's right or wrong anymore.

[joziel]

There's no such thing as oestrogen dominance, Pippi. I'd leave those groups ASAP if I were you, it's just fear-mongering.

There is only progesterone insufficiency, not estrogen dominance.

[Pippi85]

There's no such thing as oestrogen dominance, Pippi. I'd leave those groups ASAP if I were you, it's just fear-mongering.

There is only progesterone insufficiency, not estrogen dominance.

I don't want to hijack this thread. I'm new to the forum so apologies but can I ask why you think oestrogen dominance doesn't exist? I have greatly reduced looking into these groups because some things certainly didn't sit right with me, however, my symptoms seem worse in follicular which made me wonder wether too much oestrogen is the cause ?

[bombsh3ll]

People certainly can have symptoms due to excessive estrogen levels, however "estrogen dominance" is not a medical definition and as such there are no diagnostic criteria and people can mean different things by it.

Additionally hormone levels fluctuate throughout a natural cycle unless you are postmenopausal or on birth control etc, so someone can have a high level at some points and a low level at others.

Some people also use the term to describe problems attributed to low progesterone.

I think especially if describing your symptoms to a medical practitioner you are better just stating what you are experiencing rather than characterising it in terms of estrogen dominance.

[CrispyChick]

Time and time again this comes up on this forum. It's a real shame.

It's well known progesterone falls first in peri. The likes of Lara briden will tell you that.

The term estrogen dominance is very much American and many of the FB group followings are too.

However, progesterone deficiency relative to estrogen is very much real. It is also treated in many countries. It is not however recognised by the BMS or NHS and very much not recognised on this forum.

The worst part of all this is that we're all woman trying to navigate this underfunded and understand researched stage of our lives and depending on which  platform you land on, you may succumb to the estrogen is more brigade or the progesterone is more brigade.

There are just as many woman believe in estrogen dominance and solo prog therapy as there are treating peri with high estrogen.

It's a crying shame. We're all being let down.

But what works for one, doesn't necessarily work for another I guess. Just a shame the NHS are not more open. There are woman all over FB groups getting prescribed hrt and only taking the utrogestan. What a waste. The fact woman have to lie to achieve treatment that works for them, is ridiculous.

And, fwiw, private BHRT clinics in the UK do treat estrogen dominance / low prog - whatever you want to call it. Imbalance can be a real problem, either way.

[Pippi85]

Thank you ladies. I much appreciate your insight on this. And yes @CrispyChick it's so sad there's not more research and all these differing opinions going round. I'm still contemplating adding Oestrogen to my regime but I'm crippled with fear it may make things worse. Thing I dislike most about the Oestrogen dominance groups is how they almost do a witch hunt on oestrogen. But surely we need all sex hormones to be right and in balance?

[bombsh3ll]

Just because "estrogen dominance" isn't a recognised medical condition, this doesn't mean most specialists aren't happy to prescribe progesterone to someone who is having issues that appear to be related to low progesterone. These can include heavy or irregular bleeding.

However I think when people are attributing a wide array of systemic problems to low progesterone, it is worth remembering that progesterone is only present in any meaningful quantity during the luteal phase in a normal cycle, so logically those symptoms should have been showing up repeatedly for around 2 weeks out of 4 throughout their adult life.

It is a shame if women are in the situation of having to lie and be prescribed estrogen that is unwanted, especially if those prescriptions are being filled when others face shortages.

Whilst I fully support people doing what they need to in order to access treatment, and let's face it many have to say they have distressing low libido to obtain testosterone which isn't always the primary indication from the patient's perspective, I would urge anyone obtaining dual prescriptions to remember that a prescription is a menu not a mandate, and only cash in the progesterone and tell the pharmacist the estrogen isn't needed, or hand it back before leaving the pharmacy, so it can be restocked and provided to someone else who needs it.