I recently went to see my GP (I usually avoid going but needed signing off) with migraines that have gotten worse recently, and with stress adding to the mix.
I’m menopausal (I’m 47 but periods never returned to normal since I stopped breastfeeding nearly 7 years ago, I breastfed my girl for 33 months) so I guess being menopausal doesn’t help…
She sent me for a blood test, and got me to do it there and then. I take 3x 25mcg Tiromel and I didn’t expect a blood test that day so I took my T3 2-3 hours before the blood test (I’d usually not take it for 15-16 hours before a blood test).
My GP doesn’t understand T3 and I self medicate - my old GP used to prescribe it to me but 10-11 years ago she said that the prices for Thybone went up so it’d cost the NHS £300-400/month to give it to me so I started buying Tiromel online and have been doing that ever since.
My GP got my blood test results and must have gotten freaked out by my suppressed TSH, my v low T4 and my very high FT3 due to having had my T3 a couple of hours before the blood test.
She called me and I explained it to her why my results are weird, and she seemed ok with it, but I just received an endocrinology appointment for next March 🙈 and I’m worried about this! I was hassled by endocrinology all the way through my pregnancy. They tried to scare me that my baby will be low weight and premature, and tried to force me to stop taking T3 and switch to Levo. I took a bit of Levo to try to appease them but they were still a nightmare and Levo made me feel very sick! My baby arrived at 39+6 and was a healthy weight, breastfed beautifully and was very healthy.
What do I do? I don’t want anything to go with arrogant, uneducated endos who have zero idea about treating with T3 and they just tell you to take Levo and eat whatever you want, because they have no idea about the absolute importance of a healthy diet for thyroid patients!
I don’t want them to interfere with my life and stress me out which is what happened before!
My GP is usually nice and helpful, I’m so shocked she didn’t tell me when she called me 2 days ago re the blood test results, that she’s sending me to endocrinology!!
I’d appreciate any advice please, just feeling stressed 😩
Thank you so much!
Anita xx
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I just wanted to add, if there’s nothing to be gained from the appointment, then it’s time wasted as someone else could use that appointment. It’s not as though the waiting lists are small.
Yep, I agree! I didn’t ask for the appointment, nobody actually asked me if I needed it, or told me that I’ll be given an appointment, so I’m not sure what the purpose of it is? It’s next March, so quite a few months away… xx
Honestly, for the purpose of transparency only, I would write a concern to your surgery letting them know the actions you have taken and why as well as what you’ve already explained so far including the distress it has caused you.
This should be addressed and should also be uploaded to your records and if not you can ask it to be.
HealthStarDust May be right with the idea of a letter, but I think I would quietly cancel and just wait to see if there are any repercussions - they are so busy these days I bet they won’t even notice you didn’t go!
I'm sorry this is unhelpful but I'm also perimenopausal and my periods never returned regularly after my second was born. He was breastfed for 30 months!
Don't go, you cancel the appointment. As you self source your T3 you aren't required to jump through any hoops to keep the NHS happy. You are under no obligation to attend whatsoever.
Look, just not going/cancelling is probably not the way to go, as it will get everyone's backs up. Make an appointment with your GP and find out why she has done this, then cancel the appointment, having told her why. Your health is supposed to be a consultative matter, not a dictat...
I find that an entirely different approach ensues if you take along a MAN to your appointments. Yeah, I hate it too. But who cares, if it works? C'mon, grin and bear it. Have some counterarguments ready, too - printed out so that she can read them at her leisure. And get your own blood test done via thyroiduk.org/testing/priva... Now your GP cannot sneer at these results, as the lab is part of the NHS, so 😜, dude.
Tread carefully. From my experience, these overworked but well-paid generalists may just flounce off to their trailer and refuse to help at all if you tick them off... Good luck!
Thank you! Unfortunately my husband (we have been together for over 12 years) refuses to learn about hypothyroidism, he is not understanding at all when I’m unwell and he’s never advocated for me. I agree that having a supportive man there would be helpful but I don’t have anyone who could come with me. I usually advocate for myself. I’m particularly surprised about this appointment because my GP called me on Monday to tell me that my blood test results were of concern to her. I explained it to her that if my TSH is suppressed, my T4 is non existent and my FT3 is very high, it is because I takeT3 (she should have known this anyway as I told her before) and I took it before the blood test (I don’t usually take it and miss 2 doses if I know I have a blood test but she literally just sprung this blood test on me when I went in for my appointment re the migraines).
She said ‘oh OK’ after I explained it to her re my ‘strange’ blood test results and said nothing about an endo appointment!
So how do I go about this if I don’t have a supportive male to come along with me?
Batty1's right, Amazon07, just so long as you're not often at your GP's consulting rooms...regularity of dose is important.
If you look at some of the posts here about blood tests getting GP's knickers in a twist ( and guess what - they are legion ) there will be some sage comments from wise ones including links to papers etc that will show her concerns are unfounded. Just imagine the admin team mimi-mes on your shoulders, swinging their legs and whispering 'Word. Right on. Dig it, bitch' as you educate her.
If you've been married a dozen years your fella obviously has plenty of redeeming features. Sometimes these strange Martians just go to their cave when things get tough... 🙈🙉🙊 It's not his fault, he was built that way x
I would just like to say well done you, with reference to the gaslighting you put up with during your pregnancy. I am so amazed by the bravery of the stories on the Forum. AND I really like Rapunzel pointers to the Kings Fund report. I think doctors must never read any of this stuff as they seem to be remarkably unaware of it. Also however unaware of their own incredible levels of ignorance.
Thank you so so much, that brought tears to my eyes, it feels so nice to be understood and acknowledged! My husband never did that, and he always makes it out that I’m a drama queen. It feels so good to be heard, you don’t know how much your words mean to me! Thank you! 🙏🏼💝
Oh I’m sorry hubby doesn’t take an interest, I think I would tell him what I told the dr , that I hope you never have a thyroid problem as I think you’d be a bit more interested then , hope all goes well for you and you sort your dr out , big hug from me
Thank you lovely! I’ve tried and even sent him stuff, he most likely hasn’t read it or if he did, he doesn’t seem to understand the implications. Thank you for being so kind! Xox
You have nothing to lose by going and talking to an Endo and might actually gain a prescription, unless you are in one of those areas that absolutely refuse to issue T3?
I was self treating and finally got to see the NHS Endo and came away with a prescription! The price drop since your last dealing with them makes it less of a drama. Even if you still choose to use your self sourced brand at least it's on your records, which was the bit that bothered me if I ever needed a hospital stay
I felt I needed to go and stand up for our cause... if it failed I was just going to carry on self treating so no great loss
There are some good Endo's out there, I'd have a look and see if you can choose one from the list 🤗 as you can request a specific person.
Also I wouldn't worry too much as it'll likely be a year in the waiting 🙃
I hear what you’re saying, I’m just worried they’ll do a good amount of scaremongering and gaslighting, like they have done when I was pregnant!
I don’t know which Endo is good but last time I had a horrid old lady who had no congruent personal warmth or bedside manner to speak of and her only agenda was to get me on Levo.
I don’t know if there are any descent, compassionate, capable and T3 knowledgeable endos in Royal Berkshire Hospital or how to find out. 🙈
My past experiences don’t fill me with confidence.
I mentioned HRT to my GP but I want to make sure it’s bioidentical and good. Can you recommend anything? I have used Wellsprings Serenity cream for years but it didn’t help regulate my cycle, not sure how to tell if it made any difference? My GP didn’t even check my estrogen and progesterone levels, only testosterone. Do you have any advice for me please? Thank you! Xx
If you can get either the postal address or the email of the Endo dept where you've been referred you could write a letter in advance explaining your situation, why you didnt get on with Levo, why you self source T3, why your TSH is supressed ( which is Thyroid 101) .
You could tell them your GP sprung the blood test on you so you'd taken your T3 before hand. Say you feel so much better on T3 than on Levo and ask if they would consider you for a trial of T3 on the NHS.
Writing has two advantages, one, you can remember everything you need to say, its all too easy to get flustered and forget things in a face 2 face, and two it means the consultant should be upto speed on your situation and you wont have to waste time explaining everything. Half the consultation time is normally spent going over your medical history. It will also show you arent going to be bullied to oing back on Levo.
I did this with my neurologist last year when I was diagnosd with vestibular migraines and he really appreciated it and said it was a good idea. And if you decide to send it soon they might decide they dont need to see you, that your GP was simply panicking, and they also might let you know if NHS T3 is something they can prescribe or not. If not then dont bother attending.
Load of information and a useful app to track symptoms
I'd recommend body identical rather than bio, so utrogestan is the only progesterone used orally or vaginally, estrogen is either Oestrogel (gel) or Lenzetto (transdermal spray)
Why not bioidentical? I've taken bioidentical for years and do well on it. It is compounded for me in the ratio I personally need, not a one size fits all like utrogestan, AND I get the DHEA I need in it, too.
So what are ‘compounded bioidentical’ types of HRT?
Many private clinics are using ‘compounded bioidentical’ hormones. These are not the same as the body identical hormones just described to you. Compounded bioidentical hormones are not regulated and are not subject to any quality controls. The hormones are custom made in order to prescribe them
in combination doses or preparations that are not routinely available. They are neither licensed nor regulated and are not recommended.
Know your types of HRT
It is important to research any menopause treatments before you commit to taking anything – always check that the HRT you are taking is regulated and approved by NICE. There is no evidence that compounded bioidentical hormones have fewer side effects or are more effective than body identical
HRT, and these treatments have not passed the same rigorous checks that body identical types of HRT have. Unfortunately, many people do not realise this and spend large sums of money on treatments that can potentially cause several unwanted side effects, little improvement of their symptoms and no proven protection for their future health.
It is very important that you are given the safest type of HRT – body identical HRT – and in the right preparation and strength for your individual needs. You doctor or nurse should fully discuss the benefits and any risks of your HRT for you as an individual.
I trust my private clinic far more than I trust NICE - do we trust them for thyroid treatment? The HRT I'm on was around years before the term "body identical" was coined by the NHS who wanted to get on the non-synthetic bandwagon. My bloods, BP, pelvic scan etc are all good. NHS wouldn't give me testosterone or DHEA, I bet and don't even seem to know what progesterone is really for.
Wow both you and TiggerMe know so much about HRT!! You’re both very knowledgeable!
It seems to me that a lot depends on how thorough the doctor is who is prescribing the HRT, and how much they are focussed on the patient. Private clinics and doctors tend to be more patient focussed in my experience but there are some good and conscientious NHS doctors as well.
I’m clearly ignorant about this but what’s the difference between bio identical and body identical HRT? I thought it was the same thing, excuse my ignorance!
At the moment I don’t even know how they’ll decide whether I need only progesterone, or estrogen too, let alone testosterone (I don’t have much sex drive…) or DHEA? How do I go about this please ladies? Thank you 🙏🏼 xx
Needs must... much like thyroid treatment, I did use a Menopause Clinic which then instruct your GP what to prescribe
With the NHS they tend to start you on the cheapest form of tablets or patches so it is well worth doing your homework (loads of info on Balance) and actually telling them what you would like to try.
Testosterone levels can be checked after you have been on estrogen and progesterone and added if still low
There probably isn't really any difference in ingredients between bioidentical and body identical - both non-synthetic (not horse pee or progestin) - except that body identical tends to be ready-made standard doses (patches, gel, pessaries, tablets/capsules) whereas bioidentical tends to be compounded for the patient by a pharmacy specialising in that sort of thing.
Best offering within the NHS confines... yours sounds very interesting... is it very expensive? What form of Estrogen do they use? I've not had too much of a fight to get testosterone from the NHS but DHEA is a banned one I think?
Interested to know what the breakdown of yours is... also is it a tablet?
After the battle to get T3 I'm resting on my laurels a bit but maybe I should take a closer look at HRT, I do find the combo I use works well and is very easy to tweak...
Mine is a mixture of estriol (mostly) and estradiol (a little), progesterone and DHEA. I initially had testosterone, but it gave me 'roid rage and I kept smashing crockery. But I seem to convert DHEA OK without the aggression. Initially I had cream, but it was totally ineffective, so now sublingual. Quite expensive, but I avoid NHS.
Oh.. I'd be interested in a sublingual... transdermal is working fine for me but if things need a rejig I'll broaden my horizons. I have been adding a little DHEA for the last month and slightly lowered my estrogen and testosterone doses.
Do yours go on blood tests or symptoms? I'm finding that I have tuned in quite well now and can tweak with some confidence... yet to get to the roid rage level 😬
Initially dosed by symptoms - and I was ILL!!! so I had a lot - now both symptoms and bloods, and pelvic scan to see what's happening to lining of uterus.
Estriol seems to be more like T4, acting as a storage hormone to be converted into the more active estradiol.... Is it one dose a day? Presumably at night?
Goodness me seems your GP Surgery had a fright indeed! Bang out of order to refer without consultation with you. Whoopsy on their side. I think I'd take the approach of oh dear there's been an error and somehow you've been referred to Endocrinology by mistake could you please speak to to the person who referred you? (As your GP has been nice and helpful let's assume it's not that GP....eg could be their pharmacist).I flatly refused to be referred to Endocrinology recently for the NHS messing up my thyroid hormones as they put me on a drug that causes an massive increase in iodine thereby creating a thyroid hormone blockade that will take months to go thereby effectively forcing me back into a hypothyroid state as I can now only tolerate a quarter of my normal dose. (It's contrary indicated for Hypothyroidism on NICE guidelines!) . I said no because I know no one in Endocrinology is familiar with Armour. There will. be lots of tutting and I will be whipped off it making matters even more complex. I've not been kicked out of my GP Surgery and infact one of the GPs has offered to work with me to try to sort the mess out. Arranging more frequent blood tests and phone consultations.
So yes approach your GP Surgery but don't be angry just be confused/surprised by what's hsppened.... Do some digging. Hopefully you will get an apology. If necessary contact the Practise Manager to investigate and point out the patients chsrter. Don't cancel your Endocrinogy app just yet. They should be doing that!! 😉
And congratulations on your successful pregnancy and beautiful baby..... If that doesn't prove your case for T3 than am not sure what does!! Big hugs. Stay calm but strong....
That’s exactly what I was thinking but a few people made a good point about possibly being able to see an endo who has prescribed T3 in the past (from the endo list) and potentially getting it prescribed to me again, like I used to have it.
If I can’t get a knowledgeable endo, I’ll cancel the appointment because then I don’t see the point in going! X
I just did an update - I got their letter via SMS link and it doesn’t even give an endo name, it just says that someone from the endocrinology team will see me! That doesn’t seem to give me the option to choose a doctor or ask for a different one. Plus they gave me an appointment at 9am when I have to take my daughter to school… 🙈🤪
I just received this letter - they sent me a link to it via SMS.
It’s very non-committal, they don’t tell me why I’ve got the appointment so I still don’t know that, or who I will see (member of the endocrinology team - I don’t see that this would enable me to ask for a particular doctor, it seems like a lottery whether you get a good one or a bad one), plus I can’t be there for 9am anyway as I have to take my little one to school.
So what do I do with this?!
Thank you for any advice! Xx
This is the letter:
Dear Mrs A
An appointment has been made for you to attend the Endocrinology outpatient department on:
Thursday 07 March 2024 at 09:00 hours
Please come to:
Diabetes and Endocrinology Centre, Melrose House West Royal Berkshire Hospital, 71 London Road, Reading RG1 5BS
You will be seen by a member of the Endocrinology team.
Please notify us beforehand if you are unable to attend the appointment. This will enable us to cancel the appointment and, where necessary, book another one. If you fail to attend an appointment without letting us know, or if you cancel two appointments in a row, you may be discharged back to the care of your referrer (GP or Dentist).
We try to ensure that visits go smoothly but delays may happen. You may want to bring something to occupy your time. We advise that you only bring a friend/relative if they are essential to your care in order to comply with Covid−19 guidelines.
An interpreter/deaf communicator can be arranged for you but you (or a representative) will need to let the department know at least 48 hours prior to your appointment if this service is required. Please note: family or friends should not be used as interpreters.
Our car park has limited space. Please try to arrange alternative transport. If you do have to drive, please allow extra time to find a space. For more information, please visit our Trust Website.
The most scary thing on that letter is “our car park has limited space” 😱
To get to an appointment at 9am and have to get a bus etc would be almost impossible for me. (A complete nightmare tbh) As you are probably in an area near me, I won’t be asking my GP for an nhs referral any time soon - I get my T3 by private endo, don’t want to go through nhs saying I can’t have the T3 any more because my TSH is 0.01 or they want me to try without it.
I was going to say to you, why not go to the appointment, but ultimately it is your decision. I think we’ll all be interested to hear what happens if you do go.
Not sure if it’s thyroid related. I’d like to go on a cruise one day (if I ever get the funds), but am thinking it would be a bad thing. Not good in boats, plus the thought of a migraine on a ship of any kind makes me very worried.
My understanding is that you can ask your GP to write a letter referring you to any endocrinologist you feel will be helpful, and that consultant can be out of area.
If you are recommended an endocrinologist, on this thread, you could name that one.....otherwise you can ask Thyroid UK for their list of sympathetic endocrinologists, and choose one from there. If you choose the TUK list, then perhaps make another Post asking for Private Messages from folk who have seen any particular endo.
You have my empathy.... you have done so well so far, self managing your condition. I'm sad your partner isn't supportive ...... folk who don't suffer from any particular condition struggle to understand its impact on the sufferer. Any internal condition that doesn't have a physical "face" requires sympathetic imagination, and not everyone has that, including many medics.
Arghhh definitely seems that way!! So frustrating! I have been observing myself and apart from the peri menopause, the 3 things that make migraines more likely for me are:
1. Not enough sleep (need 8 hours/night)
2. Stress
3. Rainy weather (when it’s bucketing it down, I’m much more likely to have a migraine).
Not much I can do re the latter but if the first two are in check then I seem to be able to cope better with rain… xx
I think spicy foods like curry might be a trigger but I’m not 100% sure as I only observed once that I ate a curry (mild one) and had a migraine next day. I do regular intermittent fasting so I know for sure that not eating doesn’t cause me to have a migraine. Most of the time the migraine starts when I get up in the morning, or if there’s something stressful or upsetting, then I might get a migraine that day or next day.
I agree, doctors seem completely clueless when it comes to thyroid and migraines, but they are equally ridiculously uneducated about diet and nutrition! Xx
1. I am being referred to an Endo who is on the good Endo list and has prescribed T3 in the past. My appointment is in March. My GP shown me that she emailed with her. My GP also got more blood tests done and this time it was not a surprise so I didn’t take my T3 before the test (skipped 2 doses) and my T3 levels were within the range as I told her it’ll be, so she was much happier about that.
2. As suspected, blood tests confirmed that I was menopausal. In itself for me this is sad news as I’m 47 and I hoped I would have my periods for a few more years but alas, I’ve only had 1 period this year, in January. Unfortunately my little girl’s request to Santa on her Christmas list for a baby sister or brother is definitely down the pan, it broke my heart when I saw that on her Christmas list, always wanted 2-3 children but it never happened. I feel blessed to have her! 😍💝🙏🏼 The good news but is that my GP prescribed the Utrogestan you ladies recommended as a good Progesterone HRT. She gave me an Oestrogen patch called Evorel. I did ask for the Lenzetto transdermal spray but she said she normally prescribed Evorel because it’s easier to track the dosage and it has good absorption. Do you ladies know anything about Evorel or if it’s any good?
3. She also gave me a cream to be used transvaginally that helps with v. dryness. So I’m hopeful.
4. My testosterone was within range (although in the lower 1/3 of the range…) but she reckons that adding oestrogen will help with things (like libido…)
We agreed that I’ll come and see her in 2-3 months’ time to evaluate, or sooner if I have any issues. She was so nice, I feel blessed to have such a kind, helpful and lovely GP.
Any thoughts around Evorel/Oestrogen HRT would be much appreciated! Does anyone know if that’s body identical TiggerMe Angel_of_the_North , do you know by any chance?
Thank you so much, wishing you all a lovely day! 🙏🏼💝
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