I am certain that somewhere along my journey of trying to learn more about thyroid disease, I have read an article that withdrawal from Oestrogen is just one of the many triggers for thyroid problems (in my case Graves/Hyperthyroidism) but I can't for the life of me find it again !
I had been on HRT since the age of 32 having had large ovarian cysts removed (at age of 21 and then age 32). The second operation as well as removal of cysts on both ovaries included removal of both fallopian tubes and one ovary plus part of the second ovary, so I was left with half an ovary and my womb. This resulted in early menopause and I was put on HRT. I was on HRT for the next 21 or so years and it was stopped at that time by my GP who reviewed my medications when prescribing a pain management regime for Spinal Stenosis which I had been diagnosed with and that involved taking almost 20 tablets per day (a combination of painkillers and steroids). I think I should say by the way that this particular GP frowned upon the fact that I had been on HRT for so long as (he said) there were many risks involved - that said it was only a few weeks ago that HRT headlined the News on TV and promoted a discussion on Loose Women about the fors and againsts of it and how long it should be prescribed for and the "fors" far out weighed the againsts and was backed by many GP's and Specialists of the subject.
So my 21 years of in my case "bliss" (HRT) ended about 7 years ago.
Now since that time (you see in HINDSIGHT) could have been the onset of what I have now - Graves. Since I stopped taking HRT in 2008, not straight away but perhaps from 18 months onwards I started having swollen legs and ankles (something the Endo asked me about on my first appointment in 2013), hot flushes, loss of weight (but not enough to start alarm bells) and worst of all dryness of the vagina which was absolutely excruciatingly painful and I became SO stressed at this because I just didn't know what was happening to me. It was SO painful that I had to sit with my legs apart to try and alleviate some of the pain. Just prior to the onset of this dryness I had had a very bad urinary problem that was left untreated and I thought it was a result of that (having been going to the loo over 30 times a day for a couple of days). I eventually made an appointment to see a GP because I was in so much pain and I was so stressed. After an examination (also extremely painful) I was diagnosed with a dry vagina and Vagifem Hormone pessaries 3 times a week were prescribed and which I have to take "forever" because like Graves Disease, it never goes away it's treated condition.
My husband is convinced that me being taken off HRT has been the trigger for this thyroid disease that I am now having to contend with (well actually myself, husband and family are having to contend with !!). I tend to agree especially taking into consideration not only the stress of the very painful Spinal Stenosis at the point of stopping HRT but also the return of some of the menopausal symptoms and plus one or two more ! Only a few years before the onset of Spinal Stenosis, I had been very unwell and had a malignant bowel tumour removed. An operation that took me 12 months to recover fully from, caused Post Operative Trauma (hair started falling out etc) and 5 years of going for CaT scans and colonoscopies until I got the 5 yearly "all clear" !
Your thoughts on withdrawal from HRT please ?
Christine
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I'm not sure I am going to be of much help here. I had graves disease and then had it zapped which was the biggest mistake of my life as 8 years on I'm still struggling with my health being hypo and in menopause.
The information you need can be obtained by thyroid UK or hopefully one of the administrator's will see this and send you the link. I also saw the losse women programme and as my doctors keep wanting to give me oestrogen but fail to up my thyroxin this is the mistake they make. Eostrogen blocks thyroid hormone . Progesterone raises thyroid hormones.
I am certain when I look back that I was perimenopausel and the doctors should have tested my other hormones which they did not. I think if they had seen I needed eostrogen back then I would not have had my thyroid killed. However sometimes eostrogen can be responsible for the auto immune part of the disease and it is in fact the lack of progesterone versus eostrogen that sends the thyroid in a spin.
progesterone is the protector of autoimmune diseases. Eostrogen can produce many arthritis symptoms and can cause auto immune diseases such as lupus.
I'm struggling with my health now because I have now become eostrogen dominant and have terrible arthritis symptoms etc. And this of cause is fighting my thyroid meds. I am taking progesterone cream. And I also have adrenal problems low cortisol.
after Christmas I'm having my hormones tested by yourhormones.com.
there are also lovely ladies on this sight who have had early hysterectomy and use bioidentical hormones I hope they will be able to help. I 've nearly sent my self round the bend trying to work it out.
Thank you for your response Kate, much appreciated. I think we may well meet up, together with many more on here "round that bend" !! I am SO fed up with it all, at an all time low because I'm up and down from hyper to hypo AND confused by so much that I read. It's all mind boggling and my mind IS definitely BOGGLED. I can cope with some of the symptoms like feeling extremely cold and extremely tired BUT I cannot cope with the anxiety/heart pounding/phobias/racing thoughts and as jumbled as they are. My anxiety is getting worse - I think it's because this time last year my dad was taken ill (he'd actually been in and out of hospital for 12 months before that) and he died in hospital in January of 2015, so of course the anniversary of his death is getting closer and all the anxiety of seeing him in his last weeks come flooding back. Apart from that I don't think I am medicated properly yet. If the GP's and Specialists were going through what we the patients are going through then they would get their act together ! My specialist wants me to have RAI which I have told him I am NOT up for because I have read that so many patients do NOT return to what he called "normal" ! How can he call being HypO Normal ??
I know how you feel I have been there too. However when I say I regret having rai it is because I was misinformed by doctors and endos. They don't fully understand it and just go by test results. When I had graves my t3 was off the scale. But I did not have anxiety. I did not have the eye disease I didn't have nightmares and I was not thin.
however I did get all of these symptoms when put on levothyroxine t4.
With heart palpitations etc the doctors made me worse and I was thinner than when I hadgraves disease.
However I recently found out that the graves antibodies can still attack and that I may also have some hashimtos antibodies as well. At the moment I take t3 and t4. I have very low temperatures at moment. I take my meds In morning at 6.45 then I fall into a deep sleep and don't wake up till around 11.00 this makes me feel terrible. Then I have half hour feeling ok then I crash again. I have had fibromyalgi and chronic fatigue this year. Spent most of it I bed. I have four dogs that are suffering 3 teenage boys and a long suffering husband who's doing his best but is mainly frightened that his extremely once fit wife is now an invalid. I m starting to cry now for you me and all of us. Feeling low today. When I watched the loose women thing all I could think about was at least they could all walk. I'm struggling with walking at moment. Painful legs and feet. When I had graves I had deteriation of the spine. The bones on the spine were becoming deformed and I was told I had osteoporosis of spine and ankoloyeing spondilosis. So with this in mind think very carefully about the rai.
the problem is after the doctors load you up with all t4 and don't check your adrenal function. You are in a brilliant position to know all t4isnt the answer. You have foundthis site so if you do go for the rai we and others can help you become well much faster as the knowledge for you is here. Put tthings in place before hand. Check adrenal.Check vitamin levels get body well before and maybe it willwork out for you.
Dreading Christmas already.
one of the things that worries me the most.Mr kids or husband. I want to be able to look after my beloved mother as she ages as she is still looking after me. Guilt.
Oh Kate, I am going through so much of what you are going through too so you have my sympathy and I wish we could hug each other, I'm upset now too reading through your post. Because I have Spinal Stenosis I also have terrible problems with my back and my left leg - Spinal Stenosis is a problem with the spine (degeneration & tightening so that the nerves are trapped by this tightening) and it affects one or both legs, in my case just one leg. Also have a problem with 3 discs and a spinal hernia. Some days I have to take the pain killers for it which also make me sleepy and I have to take these painkillers for sure every Thursday because every Wednesday I look after my one and only (so far) grandchild. He is 19 months old now and I have looked after him since my daughter went back to work in January. It is a REAL struggle for me, it's a long day from 7am until 5.30pm and has and does take its toll on my back lifting him etc. This added to the Graves and all the anxiety/breathlessness makes the day that should be such a happy day for me, quite a nightmare and to make me feel even more guilt my 81 year old mum comes to help ME !! I am guilt ridden for so many reasons due to my health issues...........because life like this just doesn't allow you to enjoy what should be some of the most joyful times - like looking after your first grandchild without it causing so much anxiety. I don't have the strength in body OR mind that I once had - the ironing board feels like a ton weight on bad days. I've lost so much weight including any muscle and I had no weight on me to loose. I'm so weak, I look dreadful. The loss of weight has aged me a lot and hate the way I look. I'm struggling to gain any weight. I don't socialise like I did. I'm becoming more reclusive because I'm scared of having these dreadful panic attacks that I have. It's all nightmarish. My husband and children (2 grown up daughters) do their best for me and they TRY to understand what I'm going through and I KNOW what I'm putting them through and feel guilty for all of that too. We also have dogs x 3 and the only time they are taken for a walk is Sunday when my husband is not working. Luckily they are small dogs and don't need that much exercise and chasing each other around the garden seems to suffice (well it has to for 6 days out of 7).
I'm a medical mess !! Seemingly not alone
I hope you feel better very very soon Kate, you deserve to.
Just celebrated one daughters birthday, second daughters birthday 16th Dec, my birthday xmas day and my husbands birthday on 27th - it should be a happy time - going to have to pull myself out of this depression! Just don't know how with the bad memories too from this time last year.
Omygod I did laugh when you said your 81yr old mom helps you. My mom is 74 andiis also hypo but still has most of her thyroid so she does ok.
my eldest son was 18 yesterday. I know how you feel when the happy times I life we ha e to pretend not to be in pain to get through the day.
I don't think you should go through much more as it putting more stress on your bones.
I still would suggest you have some vitamin testing and then make a desicion on graves. I really want to be well for when I have grandchildren as well. As we live a hundred yards from the best beach in cornwall and can't wait to take them on the beach and in the sea. My ironing board has been up several hours now and I 've not ironed anything yet.
I often get all set up to do a load of ironing and then get carried away doing research on the laptop at the end of which I'm then too tired to start ironing shirts !
Ah well you've smiled at least once today about it taking a 61 year old and her 81 year old mother to look after a 19 month old for a day haha
I found vagifem great for vaginal atrophy (which I agree is excruciating and indescribable to anyone who hasn't suffered) but I only needed them daily for two weeks. They are bioidentical and (I think) estriol so not implicated in heart disease and cancer like the horse pee derivatives. I only needed them for two weeks as I was also put on other bioidentical hrt. Oestrogen can block conversion of Thyroid hormone so taking (a lot?) of it might have delayed or prevented your hyper symptoms. I'm not a good person to tell you as I am hypo (and was before the hrt).
What do your bloods show? I have secondary hypo (low everything) and used to suffer from tremors, which, with my low TSH made the doc think I was hyper. It was actually adrenaline rushes from poor adrenal function and hypo (as my FT4 and Ft3 showed when tested).
Low hormone levels make you feel appalling. You might well find that the vagifem helps (but if you still have a uterus and just *anyway* you probably need progestrone too).
I mean that I have bio identical hormones made up specially for me by a compounding pharmacy so I get exactly what I need. I think the only bio identical you can get on the NHS are various brands of oestrogen (like vagifem and a few gels). I don't think they do progesterone, which is what most people need and the synthetic progestins are (apparently) dangerous compounds. Estriol is "gentlest" oestrogen, followed by estradiol (estrone is no-no).
Can I ask where and how you go about getting an exact compound made up?
I will be taking the Comprehensive Urinary Hormones test that will analyse my Oestrogen, Progesterone, Testosterone, DHEAS, Melatonin, Cortisol & Cortisone, etc, etc....
This is useful in revealing if my oestrogen is detoxifying down safe pathways rather than pro carcinogenic pathways.
I have crap genes and so many polymorphisms but have come such a long way since adding T3 to my T4. I don't want it all messed up again by my thyroid hormones not working well.
I have always been against HRT but got rather talked into it by endo.
I guess we get desperate through lack of sleep and irrational thinking. However, now having rethought it through I have decided NOT to take HRT so am exploring other possibilies.
I have been prescribed HRT and thyroid meds are listed under the contraindications.
Sometimes I feel doctors (even my beloved endo) just give stuff to shut us up! !
I knew HRT blocked thyroid meds (amongst many other unwanted things) but got talked into it during endo consultation but have decided NOT to take it so now researching more.......
Although in the middle of one I am not very jenned up on the menopause.! ! .. but will be .. Lol..
The vagifem leaflet mentions nothing at all about thyroid being contraindicated. It says it contains estradiol which is identical to that produced by body. I am resisting being put on hrt... Artificial hormones seem to play havoc with me. I've bought some natural progesterone cream to up progesterone levels.
LOL... the very SAME. ... so this is the GOOD stuff.? ? ! .. ..
I really need to get reading up on all this .. (my head is FULL of thyroid, thyroid, thyroid) ! ! .. I am so confused ..
I was also prescribed Oestrogen Gel 0.06% (dose to be confirmed) and am so worried that it will block thyroid meds which have only just rectified....
I know most of us are oestrogen dominant as live in a SEA of oestrogen ... eating them, take them in the form of medications, drinking them and breathing them into the body as oestrogen-like compounds are found in food, air and water, plastic residues and exhaust fumes.
I don't want to take synthetic hormones as am scared they take up and occupy the same receptor sites in our body as natural oestrogen and can block the normal functioning of natural oestrogen in the body. .. not good ! ! ..
I have only just got my head straight and now all this ? ..
When I first went on HRT I was on Utrogestan (which I took every night, no break, as I didnt have periods) and Evoral patches (bio identical oestrogen)
Then when I read up about oestrogen dominance etc I decided to drop the patches and just take Utrogestan and tbh I didnt find any difference - it still helped with sleep, mood and flushes.
Im now on pregnenolone and found I had to stop the prog as I started feeling a tad 'restless'. I think the pregnenolone converted to prog and put my level a bit too high.
I have just remembered a link I use a lot regarding Hashimotos and a woman cycle which states .... [..If you take progesterone AND you’ve got Hashimoto’s, taking external progesterone may stimulate your thyroid gland to become more active–increase levels of TPO–and fan the flames of that autoimmune attack on TPO...]..
Disclaimer: I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal before applying any of these suggestions.
All hormones need to be in balance Prog, Oestrogen, testesterone, etc etc all working together. Oestrogen is an anti thyroid hormone (I know there is more to it but..) so progesterone is possibly the opposite but as youve read oestrogen is everywhere. My levels never seemed to be affected by my taking just progesterone but have improved and are on the up (I felt slightly hypo even though clinically I was supposedly euthyroid) on taking pregnenolone.
Pregnenolone is deemed 'safer' for women than DHEA, as less likely to convert to testesterone.
I do want to try DHEA though, see if it gives me any improvement in overall health.
You'd probably be better getting tested to see what really needed supplementing (and no, i havent as I cannot afford it!)
No worries Silver Fairy ! I've been following it all and as interesting as it is, I'm now even more confused regarding just about EVERYTHING that's going on in my body (and brain)
I agree that coming off HRT can trigger thyroid problems. I’m 62, was on HRT for about 6 years but then had an enormous bleed whilst abroad last May. I saw a gynaecologist over there who terrified the life out of me about being on HRT. Came home, tried to get an appointment to see my GP but couldn’t, so saw a nurse who referred me to the hospital under the fast track ( cancer) route, and told me to stop HRT immediately. Fortunately everything was okay, although it took about 4 months to go through all the tests ( ultrasound, smear, pipelle biopsy, colposcopy and hysteroscopy). I had been really anxious and uptight throughout this period, assumed it was the worry. After having a routine blood test in June, I was told to make another appointment in 3-6 months to have another thyroid function test. I went for the test last week and now Gp wants to discuss the results with me. She’s phoning tomorrow, and I’m convinced she’ll be telling me my thyroid function is too low. I seem to have all the symptoms ( having now googled it). Seems logical to me that if low thyroid function can be triggered by a reduction in estrogen, and coming off HRT reduces the estrogen you have then they must be linked
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