HRT newbie help! NHS appointment, finally!

[Serendipitious]

I needed a post of my own after "130396"s post today about Utrogestan and Estradot. It's taken almost 7 months but my NHS phone appointment is finally around the corner now, next Thursday. GP was reluctant to prescribe HRT herself. My periods first stopped in September 2020, then made a reappearance for 3 months in July 2021. Then they stopped again and now as of the 30th August I haven't had one for a year. I'm 45. During these two years I've also been diagnosed with endometriosis. I have a feeling that although in the last two years oestradiol was quite high the non-existent progesterone might have contributed towards this endo diagnosis.

I'm guessing my oestradiol results must be even lower but I do want to retest. SHBG is higher than normal. My thyroid results are not good either and I feel symptomatic. I think I need HRT as I have very bad brain fog, cannot sleep properly, tingling/numb hands and feet, aching muscles, quite depressed, need the loo a lot at night especially. In the last 10 days or so I'm not tolerating the heat either. Would that be a hot flush? Don't know but I do all of a sudden feel randomly hot when I'm stressed.

Will taking HRT, especially oestrogen, make my thyroid issues worse?

100mcg Levo 17/06/2022

TSH < 0.03 miu/L [0.35 - 4.78] FT4 18.4 pmol/L [10.0 - 20.0] FT3 3.9 pmol/L [3.5 - 6.5]

04/01/2022

FSH 85.0 iu/L LH 62.6 iu/L Oestradiol 385 pmol/L SHBG 159.6 nmol/L [17.7 - 138.3]

Does anybody know what happens at an NHS gynae appointment if you need HRT? I'd appreciate any advice. Thanks.

[SlowDragon Administrator]

There’s nothing on your profile

Do you have Hashimoto’s ….presumably with endometriosis you do

What vitamin supplements are you currently taking

When were vitamin D, folate, ferritin and B12 last tested…..couldn’t see any recent results

Are you on gluten or dairy free diet

Do you always get same brand levothyroxine at each prescription

Have you tried splitting levothyroxine as 50mcg waking and 50mcg at bedtime

Was test done early morning, ideally just before 9am and last dose levothyroxine 24 hours before test

Clearly Ft3 is terrible

FT4: 18.4 pmol/l (Range 10 - 20)

Ft4 is 84.00% through range

FT3: 3.8 pmol/l (Range 3.5 - 6.5)

Ft3 only 10.00% through range

Helpful calculator for working out percentage through range

thyroid.dopiaza.org

[Serendipitious in reply to SlowDragon]

SlowDragon,

I have Hashimoto's. I'm taking Vitamin D3 5000iu/daily or sometimes 2000iu. Magnesium. Myoinositol.

I took Levo 24 hours before the GP tested, time was around 10.30am. Here are additional results:

17/06/2022 100mcg Levo NHS

Ferritin 51 ug/L [30.0 - 250.0]

Vit D 57 nmol/L [50.0 - 200.0]

12/02/2022 TDL via Medichecks Levo 87.5mcg 25 hours since last dose

TSH 0.06 mIU/L (Range: 0.27 - 4.2)

18.8 pmol/L [12 - 22]

3.6 pmol/L [3.1 - 6.8]

Ferritin 68 ug/L (13-150)

Vitamin D 80 nmol/L [50 - 200]

Folate 19 ug/L (>2.9)

B12 >256 pmol/L (25.1 - 165)

I always get the same brand of Levo. Are you suggesting that splitting Levo into doses would help?

[SlowDragon Administrator in reply to Serendipitious]

Are you currently taking any B vitamins…or B12

Can you clarify B12 result and ranges

Is that a private active B12 test or an NHS serum B12 test

[Serendipitious in reply to SlowDragon]

I'm not taking any B12 or Folate supplements. They are both always high for some reason. I've updated my last message to show which lab. June 2022 was NHS and Feb 2022 was TDL via Medichecks.

[SlowDragon Administrator in reply to Serendipitious]

17/06/2022Vit D 57 nmol/L [50.0 - 200.0]

12/02/2022

Vitamin D 80 nmol/L [50 - 200]

Vitamin D has dropped, despite it being summer

When did you start taking 5000iu vitamin D daily

Is this a tablet or mouth spray?

Are you currently taking any vitamin K2?

[Serendipitious in reply to SlowDragon]

I questioned Medichecks' result from 12/02, even created a post about it as I did an NHS Vit D test on 24/02/2022 and it was a lot lower. Medichecks didnt allow me to do a retest. I took 4000iu/daily for two months from February onwards and then dropped down to 2000iu/daily for a few months and now I'm taking 5000iu/daily again. Maybe its a lack of absorption and I get polymorphic light eruption so can't stay in the sun long. They are D3 softgels by Doctor's Best with 90mg K2 MK7 by Jarrows.

[SlowDragon Administrator in reply to Serendipitious]

Perhaps try mouth spray or drops

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.

There’s a version made that also contains vitamin K2 Mk7.

One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

Another member recommended this one recently

Vitamin D with k2

amazon.co.uk/Strength-Subli...

It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average

Vitamin D and thyroid disease

grassrootshealth.net/blog/t...

Vitamin D may prevent Autoimmune disease

newscientist.com/article/23...

[Serendipitious in reply to SlowDragon]

Thanks will get these next time.

[SlowDragon Administrator in reply to Serendipitious]

Similarly…..ferritin levels are dropping

Are you vegetarian or vegan?

Look at increasing iron rich foods in your diet

Low vitamin levels and poor conversion suggests gut issues

Are you on gluten free diet?

Which brand of levothyroxine are you currently taking?

[Serendipitious in reply to SlowDragon]

I'm not vegetarian. I've been gluten free since 2016-2017. I think my digestion is off. I'm taking digestive enzymes and HCL with each meal. I'm taking Almus/Accord 100mcg Levothyroxine.

[SlowDragon Administrator in reply to Serendipitious]

With such low Ft3 gut won’t be working very well

[Serendipitious in reply to SlowDragon]

I know, but I don’t know what to do about it 🤷🏻‍♀️

[SlowDragon Administrator in reply to Serendipitious]

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors who will prescribe T3

[e-mail]

Roughly where in U.K. are you?

Some private endocrinologists on list are still doing consultations on zoom, so distance no issue

[Serendipitious in reply to SlowDragon]

The problem I have is that I tried T3 in 2017. It was a private prescription and I was able to get Thybon Henning from Germany. The first attempt it caused the worst insomnia, even at the smallest dose you could get away with. I literally didn’t sleep all night. Then second time I tried it I ended up with nausea. I think it overstimulated my HPA axis.

I then saw a private endocrinologist consultant, highly regarded by many here, who doesn’t have his own clinic but recommended I get a short synacthen test and an MRI of the pituitary. The GP said the NHS won’t do the MRI but they referred me to a local Endo for the synacthen. After waiting 7 months I also finally have my NHS Endo phone appointment next Friday. She happens to be the lady that diagnosed me when I was 23. I do hope she’s just as helpful and kind as she was back then. Failing that I’ll have to think of seeing another Endo who can hopefully help with the clinical stuff.

[SlowDragon Administrator in reply to Serendipitious]

Push for MRI ….

and ultrasound scan of thyroid if not had one done

Have you had 24 hours urine collection test

(To test total cortisol levels)

Have you tried splitting your levothyroxine into 2 smaller doses. Half waking and half at bedtime

You could ask to try 5mcg T3 tablets (Morningside healthcare) on NHS …..

could cut 5mcg tablets in half (2.5mcg) or even 1/4 (1.25mcg) to start adding T3 very slowly

[Serendipitious in reply to SlowDragon]

Really appreciate your help and support. Yes I will push for that. The private endocrinologist said the following:

"Follow up Referral to NHS endocrine unit for further assessment of pituitary adrenal axis, will need a Short Synacthen test and early and midnight salivary cortisol".

Don't know how they will do the midnight salivary cortisol, if at all.

I've done a saliva cortisol test but this was a few years ago. Everything was quite low and perhaps this is why the private endo suggested the short synacthen and MRI.

I think I have tried splitting Levo before but perhaps I didn't stick with it long enough as I felt undermedicated perhaps. I could try it again. I really do feel it if I dont take enough in the morning. I feel really spaced out and drowsy.

[MtnClimber in reply to SlowDragon]

How is Hashi's and endo related? Very curious... I've had both since early 20's. Finally got properly treated for Hashimoto's by an integrative doctor starting in 2017. Now, my antibodies are very low and I'm feeling much better at 46 y/o. I recently had a full hysterectomy due to the endometriosis pain. This is the first time I've heard of them being connected, although I've read the general statement that ladies with autoimmune issues tend to have endometriosis too.

[radd in reply to MtnClimber]

MtnClimber,

It is common for women who have endometriosis to have thyroid problems but the research articles I have read indicate it to be related more to a misaligned thyroid hormone physiology rather than an autoimmune problem. Hashimotos just happens to incorporate poor usage of thyroid hormone within its own presentation and is the most common cause of hypothyroidism.

The actual cause of endometriosis remains unknown but consistent associations have included a positive linear relationship between the amount of thyroid hormone and level of endometriosis development. It also involves the endometriosis cells altering RNA molecules and proteins used for thyroid metabolism that results in high FT4 & low FT3 levels. The difficulties are further compounded by a risk of of increasing endometriosis cell proliferation if T3 levels are raised.

Therefore, treatment of both are highly specialised and little understood because we need adequate T3 levels for all other aspects of wellbeing. I'm sorry to hear about your experience.

[Buddy195 Administrator]

Regarding HRT, it may be useful to have a look at Dr Louise Newson’s free Balance App, as I find it really useful for comparing HRT medications & having up to date research articles. There is also an ability to post questions.

I’ve not had any issues taking thyroid medication and HRT; in fact I’ve been able to reduce my thyroid medication slightly (although others report requiring a slight increase)

healthunlocked.com/redirect...

[radd]

Serendipitous,

Sorry you feel so bad.

I don't have endometriosis but would be more worried about the effect of HRT on that than thyroid hormone meds.

HRT can make thyroid hormones work better in some cases (mine & Buddy195's as we both required a decrease in meds). At 45 you are most likely in your best healthy state pre-menopausal but how much influence has the thyroid hormone mix up had on LH & FSH previously that caused your periods to stop.

Thyroid issues and endometriosis are intrinsically linked, and HRT won’t address the possible causes of your thyroid meds not working well such as low iron and/or poor adrenal function but will help replace low adrenal reserve of sex hormones if yours are depleted through compromised thyroid hormone levels.

Your FT3 is much too low and needs raising. If T3 meds gave you anxiety/insomnia/etc look to split dosing whilst supporting the adrenals as opposed to giving up T3 meds altogether. Low FT3 & high SHBG can be secondary influencing T4, not by binding as you have plenty of ‘free’ but by clogging up the liver and preventing good T4 - T3 conversion. It can also be indicative of elevated testosterone in which case a little HRT would be a good thing. Transdermal oestrogen avoids the liver so doesn’t raise SHBG further.

Why did previous endo want you to have an MRI? If a pituitary tumour was suspected did you have investigative hormone testing?

[Serendipitious in reply to radd]

radd,

Thanks for your message. As a matter of fact I am concerned about that more but I honestly don't know what else to do. Well what I mean is, I feel that I need progesterone and oestrogen even if it risks making endo worse. Perhaps low dose oestradiol gel, not sure if that would work with utrogestan as I only want body identical hormones and not a progestin.

I also know that a progesterone deficiency and not just the presence of unopposed oestrogen can drive endometriosis. I don't think I've been producing enough progesterone in the last few years which didn't help matters. Perhaps it was never good as I always had short erratic cycles and heavy periods.

As for testosterone, these are results from the GP. Taken on 24/02/22, 04/01/22, 27/10/21:

Testosterone SHBG

0.6 nmol/L [0.3 - 1.2] > 180.0 nmol/L [17.7 - 138.3]

0.8 nmol/L [0.3 - 1.2] 159.6 nmol/L [17.7 - 138.3]

0.7 nmol/L [0.3 - 1.2] 156.4 nmol/L [17.7 - 138.3]

Private endo wanted a study of the axis to ensure there isn't anything odd going on. GP had tested prolactin before and that wasn't unusually high either.

"A study of her pituitary adrenal axis and pituitary gonadal axis to see what is really going on, but it will be important to do the LH, FSH and oestradiol first while you are waiting for the referral to be materialized as the endocrine team at the local NHS will need to know what is the latest LH, FSH and oestradiol and has it been repeated at least twice to 3 times over a period of two to three months to try and narrow down the diagnosis."

Obviously the GP was able to do the FSH, LH and oestradiol tests themselves.

[Farrugia]

Hi SerendipitousI'm on levothyroxine and I also take Utrogestan and Estradot. It can be very difficult to disentangle which symptoms are menopause and which are Hashimoto's. I was taking a combination HRT before I started levo so I don't know what happens if you're already on levo when you start HRT. I think I've tried about four different types of HRT, a lot of trial and error and you have to wait a few weeks for any change of dose or brand to get an idea off how it affects you. I'm happiest on Utrogestan (which I take at night - it has massively improved my sleep) and Estradot. I also use vaginal estradiol pessaries - you might find a localised form like this helps with having to pee at night - it has for me. It's an extremely low dose so it's fine to take it with other forms of HRT (though some GP's are reluctant to give you both). I've also tried having some testosterone which didn't help me much and because I already have thinning hair from Hashimoto's I didn't want to risk the testosterone making this worse so I've stopped that. It's also expensive. Some women think it's wonderful but it made disapointly little difference for me. I think I probably need some T3 but that is the next step to sort out. I think HRT is a bit trial and error - it's not for everyone and it took me a long time to find a form that didn't have too many side effects. I still get some side effects but because I have scoliosis I don't want to risk getting osteoporosis on top of that so it's really important for me to have some HRT. before I started HRT I had horrendous hot flushes. You could be having hot flushes, when I fist started getting them they weren't too severe but it felt like a wave of heat coming up through my body from my feet to my head accompanied by a slightly panicky feeling. For the first year I would have them for a couple of weeks and then they would stop for a few weeks. They then became really severe, I hardly slept and I was furious a lot of the time. I've also found that sugar, refined carbs and alcohol (especially red wine) have a very bad effect on my sleep and hot flushes. I have friends who just felt a bit too hot - everyone is different. If you aren't sure what's going on then it's worth downloading the balance app developed by Dr Louise Newson of Newson health. You can log your symptoms each day and this can really help you to understand what is going on. Lots of useful information on there too about menopause.

It might be worth asking at your GP surgery if there's a GP who specialises in women's health and menopause. I haven't had an NHS gynae appointment for menopause so I don't know what that will be like.

Good luck with it all, I hope you get some good help.

[Serendipitious in reply to Farrugia]

Farrugia,

Really appreciate your long and candid message. What issues were you having earlier on in terms of not suiting certain types? I would be happy to stop the night time peeing but then I wonder if having local oestrogen might make Endo worse. Does the estrodot not help with these issues? Is it necessary to use local oestrogen too?

I think I’m having hot flushes but they aren’t the crazy sweaty types. Definitely feel a sense of heat appearing all of a sudden around my head which makes me panic. Tends to happen when I’m stressed so I’m beginning to understand how it happens and how to lessen it by deep breathing and trying to remain calm. I really do hope they don’t get any worse. I am really careful about what I eat and blood sugar management. I avoid refined carbs as much as I can. Oestrogen increases insulin sensitivity so losing oestrogen tips us towards insulin resistance. The tingling hands/feet is really annoying. You’re right it’s hard to distinguish between hypothyroid and menopause symptoms. I’m sure I read that oestrogen is associated with how our nerves work.

I really need to download the Dr Newson app. A lot of people are recommending it. Thanks again.