Update on oestrogen treatment for non absorption of liothyronine. A warning!

[dizzy864]

In November last year, I started seeing an endo privately for my hypo problems. He told me he was an expert. He was very definite that my hypo symptoms were due to me not absorbing liothyronine as I should. He was very definite that the cause of this was my having lost too much oestrogen when I went through the menopause some twelve years earlier. I had absolutely no problems with the menopause either at the time or since so this did strike me as odd. My gp had never heard of this either but said I should follow his advice.

I googled this. I could find nothing about oestrogen and liothyronine. I was very unwell and had been for six or seven years. I was desperate!!

Between November and April, he recommended six different oestrogen suppliments starting with herbal and moving on to HRT. All made me very much worse. In mid April he prescribed vagifem. He said as it was a pessary, I would have less side affects with it. I could tolerate it. My muscle aches became very severe and my tirednes extreme, which I put down to long covid, having been diagnosed earlier this year. I got worse and worse. I then asked if I could increase vagifem as my thyroid was not improving. For a couple of week, I used four a week instead of two. I developed many signs of high oestrogen - freezing cold feet being the most obvious. I stopped using vagifem. The endo said, " I think you're right to stop taking it."

As soon as I stopped using vagifem, I started to feel so much better. I'd had almost three months of just sitting in a chair. I was in a lot of pain with aches in my upper arms, neck , shoulders and lower back. I could not do anything as it was so painful to move my arms. I could not sleep at night due to the pain and started taking strong pain killers so I could get some sleep. I was so tired, my hair was falling out and I gained 8 lbs in the three months. My tummy is so big, I look pregnant!

I'd read about the change to prescribing rules for liquid levo and asked the endo to recommend a trial. He surprised me by telling me that in the ten years he'd run the clinic, he had never come accross it. It was then that I realised he isn't a thyroid expert or even knowledgeable on the thyroid.

Feeling better I googled again. I realised, I'd been asking the wrong question!! I'd been searching for a connection between oestrogen and liothyronine when I should have been asking about oestrogen and levothyroxin! Thyroid UK states oestrogen should only be prescribed to post menopausal women who are taking levo in very exceptional circumstances. There must be frequent blood tests and TSH must be closely monitored. This is because oestrogen blocks levothyroxin absorbtion. It adds a warning that T4 will rise which normally shows an improvement but it actually means a deterioration as levo is not being absorbed, but passing straight through the body.

10/3/21 T4 19.4 ( 11 - 23 ) and T3 8.49 ( 3.1 - 6.8 )

2/7/21 T4 21.6 ( 11 - 23 ) and T3 8.49 ( 3.1 - 6.8 ) My TSH is suppressed.

Liothyronine, which was meant to be absorbed better did not change but levo absorbtion was blocked and increased as per the warning on Thyroid UK.

It explains my muscle and joint pain, hair loss, weight gain and tiredness - I'd become even more hypo!

What I can't understand is why the endo ever prescribed oestrogen therapy. I have no menopausal symptoms and I never have had any! I cancelled my endo appointment due next week. Although my blood test did show that my oestrogen was low, that's expected after the menopause. I also found out that had I been living in the States, they use a much more sensitive oestrogen test. I would be expected to have only 2.5 pmol serum oestradiol where as here we only test for less than 18. So I probably am not even low!!

I asked my gp to prescribe liquid levo. It was passed onto a clinical pharmacist who told me that it cannot be prescribed for malabsorbtion problems only tummy problems - which I have plenty of anyway! She arranged a referral to my local hospital. That was unacceptable as I'd waited seven months last time. I saw an endo in January last year who told me my problems were outside his expertese and that there was no one else I could see. I had no intention of repeating that experience!

I went back to my gp a couple of days later. She agreed a two bottle trial - which was 40 days. After taking the first bottle I am so much better - muscle aches have gone. I am able to get up out of my chair and do things. I am still getting tired but it's such an improvement. I've reduced lio as I was getting hyper. I've been back to my gp and she has agreed I can stay on liquid levo. I am really hopeful that my improvement continues and I can finally get my life back.

I'm sorry this is so long but I really wanted to warn everyone about taking oestrogen suppliments with levo. I had no idea the affect it would have on me. I have been so ill and so lethargic and so miserable to live with!!

[SlowDragon Administrator]

gov.uk/drug-safety-update/l...if symptoms or poor control of thyroid function persist despite adhering to a specific product, consider prescribing levothyroxine in an oral solution formulation

Long research article on Malabsorption and levothyroxine

academic.oup.com/edrv/artic...

[dizzy864 in reply to SlowDragon]

Hi, I found another article and then this one stating that liquid levo should now be given for malabsorbtion problems.The clinical pharmacist read the article and said only those with tummy issues should be given it. She also pointed out that it is £250 a bottle, which was why she did not want me to have it. She could not have based her decision on anything medical because we had never met and she did not have access to my medical notes. She was clearly wrong. When my gp read the article she immediately agreed a trial and told me she had "spoken" to the pharmacist. I also don't believe it's £250 a bottle ( 20 daily doses ) but it is expensive. We found it privately without a prescription for £100 a bottle. Unfortunately, a bit beyond our budget.

[SlowDragon Administrator in reply to dizzy864]

Liquid levothyroxine is expensive, but it’s not as expensive as pharmacist was saying And not as expensive as T3

What dose levothyroxine are you currently taking

NHS drugs tariff for July 2021

nhsbsa.nhs.uk/pharmacies-gp...

Levothyroxine sodium 100micrograms/5ml oral solution sugar free 100 ml

£164.99

Levothyroxine sodium 50micrograms/5ml oral solution sugar free 100 ml

£90.93

Levothyroxine sodium 25micrograms/5ml oral solution sugar free 100 ml

£94.99

[dizzy864 in reply to SlowDragon]

I take 125mcg levo. Liquid levo is expensive as each bottle contains only 20 doses and not the usual 28 or 30 doses

[Lalatoot]

So glad you are on the mend.This is not only a warning about oestrogen and levo - it is also a warning about how we perceive doctors, their qualifications and supposed expertise.

Many of us on here have learned the hard way not to trust the "experts".

[dizzy864 in reply to Lalatoot]

Hi, Yes it is,. Unfortunately, I've had almost entirely very bad experiences with doctors. Starting with a diagnosis of a premature menopause from a gp who did not accept that a menopausal blood test was worth doing. After a year of hrt making me very ill she told me I was clinically depressed and should go on uppers! Incidentally, I went through a very late menopause almost twenty years later - as I expected due to family history. I was finally diagnosed by a helpful gaenacologist who took pity on me when I told him how awful I felt and looked.A gp told me over a four year period that all my hypo symptoms were hyper and drew diagrams to show me how I could reduce my meds. He ignored the fact that each time I tried, I became more ill. Changing gps was not an option as it's my only surgery. They allocated him to me and I was not allowed to change. I finally got away from him by booking an appointment with another gp while he was away on holiday. My current gp is much more helpful and listens to me.

In the last couple of years, I 've seen an nhs endo who told me, my problems are outside his field of expertise, followed a few months later by a private "expert" who told me to stop 100mcg levo immediately, remaining 25mcg two weeks later and to reduce 5 mcg of my 55mcg of lio two weeks after that. He added blood tests are unnecessary as many of my patients do very well on 55mcg daily of lio! It seems my many hypo symptoms - including very noticeable splits in my eyebrows were all in my head!!

I think I've learned finally that there are no thyroid experts out there!

[bantam12]

I was on Vagifem and other eostrogens for many years with no problems whatsoever so as with anything it may suit some but not others.

[dizzy864]

Hi, I just wondered if you went on vagifem after going through the menopause? That apparently is the problem. Women who start vagifem before or during the menopause may be ok with it. it does not always affect levo then but needs to be monitored in case it causes a problem. It's a serious problem for women who are started on it after the menopause if they are taking levo. I have been on levo getting on for thirty years and am twelve years past the end of the menopause. In these circumstances, I do not believe I counted as a very special circumstance as I was not having any menopause symptoms. Even if I did, I should have been carefully monitored - blood tests looked at but not acted upon every four months is not sufficient.

[FancyPants54 in reply to dizzy864]

I have to butt in here. Vagifem, at the normal dose of 2 per week, is equal to 1 tablet of oestrogen per year. In your case that's 2 tablets. There are thousands of women who are hypo and on HRT taking oestrogen by tablet, patch, spray or gel every day with no issues at all. Vagifem is not systemic. It is such a tiny dose it works in the membranes of the vagina keeping vaginal flexibility and better bladder control (the two organs are close). Women with vaginal atrophy use it sometimes every day with no systemic effects and take HRT on top of it for other symptoms.

I'm not saying it wasn't an issue for you, but it's not a major reason for warning others off. HRT is vital for women's health in many instances, hypo or not. Please don't spread fear about it when this is a very unusual reaction.

Oestrogen can affect thyroxin uptake, but not by a lot and so it's usual to have a blood test 3-6 months after starting HRT and adjusting your Levo dose if necessary. Both hormones are vital for longterm health in many of us. And oestrogen is bone protective and heart protective so many of us won't be giving it up until the grim reaper makes an appearance.

[dizzy864]

I can only suggest you go to thyroid UK and search oestrogen and levothyroxine. That's where I got the information from. The warning they gave was exactly what happened to me. It hugely affected my levo uptake, which was clearly shown in my blood results as well as how it made me feel due to severe hypo symptoms. I was not warned of this affect and was given it having been diagnosed with an absorption issue. If you are doing well on it, then of course you should continue with it.I take exception to saying I am spreading fear when I am warning people of a very real probable outcome. I really wish I had been warned before I started taking oestrogen. Then I would have made an informed decision on whether to take it or not. But much more importantly I would have known that I was becoming severely hypo instead of blaming it on something else. Having been diagnosed with an absorption problem I would never have taken it.