I was diagnosed with hypothyroidism in Sept 2017 and initially put on 25mcg levothyroxine. My blood tests also showed I was perimenopausal. The GP that I saw then said he'd treat the thyroid first and then we could consider HRT if symptoms not fully resolved, given that some symptoms could be due to either hypothyroidism or perimenopause. My next bloods saw TSH back in range but I hadn't seen much difference in symptoms; the GP ( a different one in the same practice) had to be pushed to increase my levo dose but she did agree to do so, so I've now been on 50mcg for several weeks. But she seemed to think all my symptoms were menopause-related rather than thyroid, and said that if that didn't resolve things fully, HRT would be the next step. In the next fortnight I will be getting my bloods redone and will have to go back into battle - and I am fearful that they will put my continuing symptoms down to the menopause and that it will be even more difficult to get an increase in levo and that they'll push me towards HRT instead. And I don't know what the best way forward is...
As a bit more background, I was diagnosed with PCOS in 2011 (I'd had symptoms for years) and put on the pill (Yasmin) to control heavy irregular periods and hirsutism. The pill worked well for me for two or three years, then I started getting breakthrough bleeding that was increasingly heavy. Brushed off initially by GP, but in May 2017 referred to a gynaecologist. Hysteroscopy and other tests ruled out fibroids and relevant cancers, and I was taken off the pill and a mirena coil fitted in June. That controlled the bleeding brilliantly, but I started getting bad hot flushes. Then diagnosed hypo in Sept. When my levo dose was put up to 50mcg in Nov, the hot flushes stopped completely within a couple of days - wonderful! But I got a little spotting for several weeks. Then spotting ceased, and hot flushes have gradually returned ☹️. I don't think I can be over medicated with my levo as other symptoms (tiredness, weakness) continue, although improving.
All in all, I am really confused about what's due to being hypo/on levo and what's due to being perimenopausal. Coming off the pill brought to light what I thought were menopausal symptoms, but then for a while levo seemed to reduce those significantly, though that didn't last. I know all these hormones must interact but how do I figure out what to ask the GP for (or what treatment to decline)?! Is it just trial and error to see what works? If HRT will also help me get back to my normal self, alongside levo, then great. But the risk is that the GPs focus on HRT and leave my thyroid under medicated.
And then I've read some articles about oestrogen dominance which I don't claim to fully understand but which sounds as though it can exacerbate thyroid problems. As I have the mirena coil which has progesterone, I think I would just be given oestrogen as HRT, but apparently the coil's hormones just work locally in the uterus so could I end up with oestrogen dominance elsewhere in my system, if that makes sense?
I'm sorry for such a long post. But I hope someone else out there might have had to grapple with these issues and might be able to advise me on what the best way forward is. Thank you in advance!
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Tasker
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Thanks - that's a really helpful way of looking at it, ie deal with peri/meno symptoms to then get focus back on thyroid. And that should help the GPs feel I am working with them rather than having my own agenda too, and I do want to keep them on side if I can.
As the pill for PCOS seemed to help at least some of my symptoms (in that hot flushes only really became evident once I was off it) that suggests that HRT in some form will be helpful, I guess.
I currently have the coil fitted as the pill stopped controlling my bleeding (which of course could also be a hypo symptom!) so will see what HRT they suggest alongside that. They haven't gone into detail on that so far as the discussions have focussed on thyroid issues. I expect to see the GP in mid Jan so this all helps to get my head around these things before then! Thanks again for your reply.
Have you checked the coil isn't causing some of your problems?
Some women simply don't get on with progesterone only contraceptives including the various mini-pills and Mirena coil.
While the Mirena coil is only suppose to work on the uterus if you do an internet search particularly on the popular parenting sites you will find women who have had issues with it in.
I do know from one of the mini-pills I was put on but stopped taking due to side effects, that lots of women reported problems which doctors denied they could have. Six months after I found all this the drug manufacturer changed the side effects listed to include all these signs and symptoms even though women had been reporting them for years.
Unfortunately doctors can only report on what is found in the literature so it is annoying if you have a strange side effect and they deny it is possible.
Another possibility is you could have a vitamin and/or iron deficiency. I know some women I know with vitamin D deficiencies have reported having hot flushes.
Thanks for your reply, Bluebug. As a result I've just spent some time reading about other people's experiences of the coil, but I haven't come across anyone so far who has suggested that the onset of hot flushes is linked to it, so I think my situation is different. Those who have problems with it talk of pain, heavy bleeding, headaches, anxiety, depression, weight gain etc, and while I suffer some of those, I did so before the coil was fitted, so I can't blame the coil for them really!
But it's been useful to look into it, so thanks for the suggestion.
My vit D levels were in the adequate range at the end of the summers without supplementation, so I am now supplementing to give them a boost over the winter. My ferritin levels were low so I am taking ferrous sulphate to boost those.
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results
Thanks, SlowDragon. Yes, I have got Hashi's and, following advice from this forum, I have been gluten free for about two months now and am systematically supplementing to improve vits and mins where necessary, and making kefir to help my gut too. As NHS are unlikely to repeat my blood tests for vits and mins I'm planning to get them retested myself in a few months time, to see if they are moving in the right direction. My thyroid bloods are due to be redone by the NHS in a couple of weeks' time (depending when I can get an early morning appointment).
I didn't realize Hashi's and PCOS were linked so that is very revealing and, given that I would trace PCOS symptoms back to my teens (I'm 46 now) it seems this has been brewing for much longer than I had realised! And in the meantime I've been happily eating lots of gluten and probably making my poor gut struggle so much more than necessary ☹️. I knew I'd had gut issues from my teens (and my sister even more so, as she has IBS) but put it down to living in East Africa at that age and assumed it was due to eating slightly dodgy food occasionally. Still, I'm on the right track now hopefully! Trying to stay positive on what seems a long and complicated journey back to health - v grateful for the help of this forum ☺️.
Hi Tasker
I would echo Slow Dragon's comments. But add that maybe you could go one better than gluten free and try the AutoImmune Paleo (AIP) diet. Many people with all kinds of automimmune conditions get great results from this diet. It's a difficult diet to undertake as it's very limited but if it helps your symptoms it would be well worth it. It's all about healing the gut in order to calm the immune system. Poor gut health can lead to symptoms in all body systems, some apparently unconnected (but really our whole body is connected so it should be no surprise that any part of you can be your 'weak link'). A good book to read is The Autoimmune Fix by Dr Tom O Brien.
Your story strikes me as a storm of hormones, your own and synthetic. It sounds like you've gone down a rabbit hole of trying to deal with symptoms (understandably, of course) with medication, but haven't considered dealing with the cause of the symptoms. (This is easier said than done as everyone's cause is different and most GPs and consultants in the NHS are not interested in causes. They only have time and funding for dealing with the symptoms that they have a surgical or medication solution for. ) So figuring out your causes is up to you, and any other practitioners you choose to employ at your cost.
This way of looking at health problems initially sounds totally overwheming, especially when you already feel unwell and not strong enough to work things out yourself. But if you can find the strength and support to begin, you can research and learn about your own body and what might actually be going on. you can become your own expert. And if your GP won't support you, which is likely, perhaps find other practitioners who can.
I was in a very similar situation to you a few years ago and am mostly much better now. I was hypothyroid, had oestrogen levels through the floor (I was 35 years old), was depressed, ans had loads of other weird symtoms. I get blips now and again but I am more astute to the signs my body gives me so can recover easier.
I found solutions by using a 'big picture' perspective. I worked with a functional medicine doctor in the States (via Skype) who helped me to use glandulars, herbs, diet, bio-identical hormones, exercise and stress reduction to solve my problems. It took at least a year of hard work but it was my only option left as main stream NHS medicine over here was just closing door after door in my face. I had to do something different. I also read countless books, listened to hours of podcasts, and spent hours reading on the internet. It all paid off in the end.
Stress can be a big contributing factor, so it would be worth considering what stresses you are under and limiting them as much as possible, and finding stress management techniques that work for you. Look at emotional, financial, family, work, bereavement type of stresses - cast the net wide and see what you find.
I hope I've given you something worth considering. It is possible to empower yourself to get better, there is hope. I wish you strength and luck in finding solutions Tasker.
Thank you for your reply and suggestions. I have to confess that the AIP diet feels a step too far for me at the moment; I love my food and am coping with gluten free but daunted by the thought of cutting out lots more if I'm honest! But I will look into it and bear it in mind as an option.
At the moment I can't afford much by way of privately funded advice/treatment, so will continue to see how far I can get with the NHS before looking at other routes. I am hoping (have to hope!) that sticking with gluten free, supplementing well and if I can get the GP to increase my levo that I will continue to make progress. If not, then I'll have to explore other ways forward.
Do I take it from your experience that you would advise against HRT/ oestrogen from the GP? I have had a friend recommend sage tablets to help with the hot flushes and will try that. But if some of my tiredness, mental fog etc might be due to menopause rather than hypo, I'm wondering if HRT will help - or do you think that adds to the problem? I do take your point about trying to treat causes not symptoms, but given the menopause itself (as one cause of my problems) can't be changed, I am wondering what the best way is to alleviate its symptoms, while also trying to address the causes/contributing factors (gut, stress etc) underlying the hypothyroidism.
Menopause is inevitable for all women but not all women suffer with it. I think if one gets healthy through foundational means then the menopausal symptoms will be greatly eased as an effect of that, as can many other symptoms at the same time.
I can't say what you should do, as your situation is complex, and I think you need decent assistance in unraveling it. What is cause and what is effect in health needs a professional eye sometimes, especially when issues are multi-factorial and chronic.
But, personally, I wouldn't want to go near HRT or any other synthetic hormonal treatment. The Mirena coil was a significant part of my own hormonal problems so I will always use foundational methods to fix my problems in future. I am fully expecting some hormonal turbulence when I reach menopause but I know now that using herbs/diet/exercise etc can be very successful so I will use that and only resort to synthetic options when ALL other options have been exhausted.
I know from experience that you do have to do the work to get meaningful and lasting positive results, and then continue to do the work to maintain it. But you also have to be in the right frame of mind to embark on doing the work. And it sounds like you're not there yet, since you say you aren't ready for AIP. I guess it depends which you love more - your existing diet or good health? Having said that you know your body best and what you can cope with at what point so I say these things with respect and without judgement.
One of the most important parts of my recovery was finding a practitioner I trusted to help me get well. His name is Justin Marchegiani (Just in Health, Texas, USA). He has a podcast which I still listen to. This allowed me to sort of get to know him and his philosophies before working with him, to ensure they would gel with my own thinking and character. But as I said before, I had to really do the work for at least a year to get the results. And all the while have complete faith in the process to work. It doesn't always take this long but I'd been unwell for a long time so it took a long time to undo that.
Thanks for all your thoughts, and it's interesting to hear of your experiences. Really appreciate your advice and I'll think carefully about the way forward.
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