I’ve got a TSH stuck close to 0 for some time now. Currently on 75/100. GPs just want to keep lowering Levo. NHS Endo not interested. However I have a follow up with them later this month. Previous private Endo doesn’t specialise in female hormones and was a private consultant so not attached to a hospital/clinic.
I have ordered an Advanced Wellwoman Medichecks test as new GP won’t test FT3. Hair loss really bad and skin very dry. Getting more joint pain. Been on HRT for 6 months now. Want to switch from oestrogel to Estradot, GP reluctant to do so. I expect they want to get advice from the local hospital who prescribed HRT in the first place. GP wants to run TSH and FT4 first and then consult the local hospital about oestrogen. It’s all so slow and pointless. I’m 45. Thanks.
I’m fed up 😔
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it’s really a shame how few ‘experts’ understand thyroid and sex hormones. You could try contacting dr Louise Newson clinic and asking if they have anyone with thyroid hormones, they have expanded recently. Good luck I’m in a similar position it’s very frustrating
I don’t know I remember looking previously and didn’t say specifically they have thyroid specialist but I know they now have a huge number of doctors so worth contacting them to ask. Also worth asking if they can liaise with thyroid specialist as you might find a thyroid specialist who can do this
They won't do that. I saw Dr Newson herself for several years and she completely ignored my thyroid issues in relation to the HRT. She sees less patients now as she's so much more busy with the business side of things, so I see a different doctor there now. Also didn't want to go near the thyroid side of things. They very much stick to HRT. It is their specialism. One of the original doctors there said to me once at a social event that it wasn't just important to have thyroid levels in range. Where in range was also important. But I suspect that's about the closest they go and she's been a GP for decades.
I can't fault them on the HRT side of things. But thyroid I have had to struggle alone with. We need a clinic like Newson Health for thyroid only. We really do.
Hi - I had several appointments with one of the doctors from Newson Health and I'm now on Estradot (and Utrogestan)which I much prefer to oestrogel or any other type of HRT. I discussed thyroid with her (I have Hashimoto's) because I still felt exhausted and my GP said she couldn't test anything other than TSH . My Newson Health doctor offered to include thyroid tests when I had my female hormones tested. When the results came back she said my thyroid results were normal and wasn't interested in the nuances of how far through the range the results were etc. She was interested in getting my oestrogen and testosterone optimal however, rather than just in range. I don't know if Newson have a thyroid expert but my experience was no help for my thyroid. I think they were great for optimising my HRT but in the end I saw a thyroid expert privately and am now taking NDT which has made me feel much better. Has your gp said why they don't want to give you Estradot?
Thanks. I think they were reluctant because it was the local hospital that prescribed. I’ve got another GP phone appointment tomorrow and I will refer them to the letter the hospital sent which includes prescribing guidelines. Hopefully that will be enough for them. I’m on 3 pumps of Oestrogel and I just want to use the patch. I think that’s 75mg Estradot.
What dose are you on? How did the testosterone help?
I'm on the 75 Estradot patch and I take Utrogestan as well as I'm post menopausal.
I'm not convinced that the testosterone helps much. I hoped it might help my energy and maybe joint pain but it hasn't helped with that. I stopped taking it for a while because I was worried it was exacerbating hair loss but I now think that is more to do with thyroid. I've recently (last two weeks) started taking the testosterone again as I have an unused tube from last year and I thought it might be worth another try. I definitely sleep for longer when I'm taking it but I'm not sure this translates into having more energy. I don't know if I would actually pay for more when it runs out as I'm already paying for the NDT.
I've found it rather trial and error in terms of finding the right kind of HRT and the right thyroid hormones. It took me about 8 years to finally get the best HRT for me and I was on Levo for about 3 years (feeling exhausted) before switching to NDT last November. Things are by no means perfect but they are better than they've been for a while.
Hi, how much NDT are you using now? And did you ever have a time as you were increasing your dose, where you felt exhausted and with increased heart rate but still low temps? I'm now on 2 & 1/4 grains but my legs hurt me so much. The thigh muscles feel like I've pulled them and all my leg and feet joints hurt. I'm so tired I can't get anything done. I can't work out if it's too much or not enough.
Hello - I'm on 3 grains of Armour now. I started on a very low dose but even on that I felt a bit more alive than on Levo, it felt as if things were moving through my bloodstream or something - I felt more like me. I've also lost the weight I gained when on Levo. When I first got up to 3 grains I had much more energy and didn't even think of having a siesta whereas on Levo I wanted to lie down from about 12 for the rest of the afternoon. I get quite jittery after my morning NDT dose, as if I've had too much caffeine (maybe increased heart rate?) and each time I increased the dose I got headaches. My temperature has remained on the low side but I don't think I feel the cold as much. I don't seem to get the headaches now but I don't seem to have quite the same amount of energy either. I'm wondering if I need a slightly higher dose or if I need to be more vigilant with my vitamins etc. Pretty sure my ferritin should be higher so I need to address that. I'm due for my second lot of thyroid blood tests soon so that should give an indication of whether I'm on the right NDT dose.
I think my joint pain may be unrelated to thyroid - one theory is that it's because my joints are hyper mobile. My thyroid doctor suggested I try LDN for the joint pain but it's quite expensive and I'm a bit hesitant to take another medication with it's possible side effects.
Overall in answer to your first question I would say since first starting NDT and increasing the dose I've had more energy (despite still having low temperature and palpitations) and haven't had the exhaustion you've had (apart from the occasional bad day) - I sympathise because that's how I felt on Levo. Hope you can get some solution soon.
As you see someone who has prescribed you NDT, how did they tell you to conduct your blood tests when the time comes around? What sort of gap did they tell you to leave between the last dose and the test?
NDT is different in that the T3 in it is bound so that it's more like a slow release.
Hi Farrugia, sorry I know this is a post from six months ago but I was searching on the site for how HRT interacts with levothyroxine and saw your post - I’d be really interested to know how you were prescribed NDT? I’ve been on levothyroxine for seven years and liothyronine T3 for about 5 months and still feel exhausted most of the time, I’d love to try NDT as I feel it might suit my body better but don’t know where to begin? How to source and work out how much to take? Wary of crashing again! I’m 44 with two young kids and in perimenopause (pretty sure of that!) and have hashimotos, so doesn’t help the fatigue! Thanks so much for your help
If you contact Thyroid UK admin (through website) you can get a list of thyroid friendly endos, but a really good clue is if you look on their profile at the hospital they work in and see if they are a diabetes specialist.
I have yet to read of a good outcome when they have specialised in Diabetes - because they haven't specialised in the thyroid........ If you want suggestions make sure you ask people to private message - No names on the forum 😉👍
Thanks I am aware of this but was keen to get a personal recommendation. Also, yes the NHS Endo introduced herself by saying she’s from the diabetes clinic 🙄 She was however the same lady who diagnosed me when I was 23. She was very nice and kind to me back then but she seems to have changed her attitude now.
If you live in the North West I can private message you. I saw an amazing private endocrinologist 7 years ago as my thyroid wasn't responding anymore to my medication and was virtually bedridden.Little did I know she was a renowned expert in the menopause. I didn't know I was in perimenopause but she knew straightway. Got me on hrt, all trial and error for nine months but got me my life back.
She also gave my a private prescription for t3 but I could buy it cheaper myself.
That sounds amazing. Maybe that’s what happened to me. Being perimenopausal and not knowing it and because it was earlier than usual perhaps that’s why no GP realised. If you don’t mind please let me know who your consultant is. I’m in London and not the North West but perhaps she does phone consults and either way I’m keen to find out. Thank you.
Also, which HRT are you on and how much are you taking?
I'm on estrogel 6 pumps that finally rid me of night sweats. 100mcg utrogestan that I can't live without as this knocks me to sleep evety night and last year I started on testosterone, tostran 1 pump every other day. I was lucky as it really helped me. I didn't ask for it for libido but mentioned that just in case . I wanted it because of everything else. My brain fog lifted, no more feeling like a 90 getting out of bed aching, more energy, calmer, happier and just general feeling of wellbeing. I'll pm you name of consultant and you'll most probably already have heard of her. I imagine she will do zoom appointments.
Gosh 6 pumps! Where do you apply the stuff? I’m struggling to apply 3. Plus I imagine you’d get through one bottle in 10 days? Would you not be better off with a patch?
I still have brain fog, achy joints, terrible hair loss and very dry skin. I only had hot flushes here and there but I’ve been feeling hot at night, not a sweat, for a couple of years now. I’m either too hot or too cold. My hair loss became suddenly worse when my periods stopped all of a sudden during lockdown so I’m guessing perhaps I need more oestrogen to fix that. My hair just doesn’t grow any more and now I can see my scalp I’m so desperate not to lose it all 😭
I didn’t know I was peri either I was 42 when periods suddenly stopped. Now I’m 45 but I only managed to get HRT 6 months ago.
I can’t seem to fix my thyroid. My TSH is just stuck close to 0. My skin is like paper. I have to say HRT has given me a lot more energy than before. Not even Metavive could previously help. I wonder if upping the dose of oestrogen can help with skin and hair. I’m just afraid of taking too much. Also the gel is causing a rash now on my arms ever since they changed the packaging.
Thank you very much for the message. Yes I have heard of her I often see messages from people asking about her.
Yes I do and get 5 bottles at a time. I just put 3 pumps on each inner thigh and any excess on hands rub on my outer arms.
I don't suffer with hair loss but I know a lot of ladies do and watched a really informative video with a trichologist in a menopause group I am in. I can message you the name if you would like.
It was dr M who first upped me to 6 pumps to try get on top of night sweats also prescribed clonidine for them too.I was reduced to 4 by my nhs Menopause gyne a few years ago when breast were so sore a could sleep. Upped and downed over the years but being on 6 again have relieved night sweats completely. I am going to reduce 5 to see if still OK.
I'm very complex in everything thyroid
My hair has always been horrendous, my skin is so dry now and cannot get on top of my dermatitis on my hands. I'm unable to lose weight, cold intolerant as well as heat intolerant, constipated and low body temperature. I'm on t3 only and have been for 8 years. The only symptom that t3 relieved was chronic fatigue that made me bedridden. I can live with the rest but not chronic fatigue. Like I said I'm complex but t3, estrogen, progesterone and finally testosterone have given me better quality of life.
I always seem to need higher doses of hormones compared to others 🤦♀️
That’s quite a journey you’ve described. I was also diagnosed with CFS in my late thirties, looking back I think I was just perimenopausal and that was the reason for my fatigue. Nobody even considered it.
Did Dr M up your oestrogen based on blood results or purely on symptoms? Did she ever request oestradiol results? I’m doing a Medichecks Advanced Wellwoman test and I wonder if it’s worth doing at this stage or even at all? It’s on special offer at the moment.
Dr M increased my estrogel down to symptoms but I always went armed with medicheck bloods. Problem with bloods in perimenopause is they are up and down constantly so that's why they don't go off them.Yes they tried to label me with chronic fatigue and even dr M thought it could have been but then realised not.
I too think I could have started peri late 30's as that's when all my symptoms started.
Here is the link to the group. Highly recommend as I learnt loads
Thank you. The GP apparently called me today but I didn’t answer the phone. Really don’t like these phone appointments. I had my phone in my hand all the time.
I even tried to get an appointment with Dr M but the next available slot is 29th September 😱🙈
I’ll have to persevere with the gel, I’ve upped my dose, until after Easter and I’ve booked a face to face with the GP now. But it doesn’t feel right. I’ve got so many symptoms but the hair loss and lack of growth is really frightening me now.
Did your doctor not consider raising progesterone if you are taking 6pumps of oestrogel? I'm only on 2 pumps but Utrogestan has been raised to 2 tablets a day to prevent unopposed oestrogen.
it makes me very cross to read that a GP is ‘too scared’ to trial you on a different HRT! I think you should push back if you can? Maybe see another GP. In my experience, HRT is similar to thyroid treatment (unfortunately!) in that it’s trial and error. And the fact that you have Hashimotos should be parked while your HRT is figured out. I was put on estrogel and progesterone. Felt awful. Wanted my original HRT back (from before Hashi diagnosis which I had stopped regrettably) and was refused this. Had a bit of a tantrum and saw the practice lead GP who just shrugged and said who was she to make women’s lives worse? Handed me the prescription and job done and now feel much better. My Levo hasn’t been adjusted and didn’t need to be - HRT had no effect on my levels. I’m on Tridestra. Hope you get this sorted x
I’ve got another phone appointment tomorrow. I’ll refer them to the letter they received from the hospital clinic advising them on prescribing and if she’s still unsure I’m sure she can email them. I don’t know if there’s anything on the BNF I’ll check myself.
I’ve never heard of Tridestra but glad you feel better on it. I’m happy with Utrogestan. Had some initial problems and started using it vaginally. Never again. I just want to be rid of using this gel. I’m running out of places to apply it.
You need to be careful with a patch because they all contain body identical oestrogen but not all contain body identical progesterone. I can't remember which patch contains what because I don't use patches, but will have an investigate. Meanwhile you could put up a new post.
I've just had the Advanced Wellwoman Medichecks test. Would highly recommend 😊
It is the Everol Conti patch, which I am on, I recently tried Utrogestan with the gel as I need an increase and the Everol Conti patch only comes in the one dose -50mg. I couldn’t tolerate the Utrogestan at all, so for some of us synthetic progesterone is better.
I am only aware of the Everol Conti patch, these have been brilliant for me with zero side effects, and I am usually very sensitive with side effects from medication. I just wish they also made them in a 75mg version too.
I thought the likes of Estradot were just body identical oestrogen? Are you still on Lenzetto?
Good to hear you got on well with that test. I’m not sure I need it now. Yesterday the GP tested a load of vitamins, TSH and FT4 and ferritin but not FT3. I think I just need TSH, FT4 and FT3 plus oestradiol. Although I got the test at a discount. I’ll have a look again. Thanks.
Lenzetto is good! I use it in combo with the newish Bijuve capsule which has body identical oestrogen and progesterone in it as I'm post meno and need the same daily. I really like the combo. They work much better for me than patches or gels.
I thought people with hypothyroidism shouldn’t take oral oestrogen as it can bind to thyroid hormone? I’d love to take a capsule rather than apply messy gel each morning. How come you’re using a tablet as well as a spray? Do you take the capsule at night?
Have you got your FT3 results? I see you mention dry skin and hair loss a lot... I found that upping the HRT made my awful conversion worse and T3 made all the difference.
Menopause and low fT3/4 have so many cross over symptoms
My TSH is almost 0 and I don’t tolerate T3 at all. Either causes insomnia or nausea. Overstimulation of the HPA axis I think. I’ve kind of given up on fixing my thyroid. Having some oestrogen has definitely helped but I’m just concerned I might not be absorbing it.
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