Help!!! Recommendations for an understanding Endo in London/Reading... long post but please read!

[CCheale]

Hi All,

I am a 32yo female who was finally diagnosed with hypothyroidism in 2010 after years of symptoms (weight gain, excessive thirst, debilitating fatigue, depression, anxiety, severe constipation, swelling of hands and feet, sensitive to cold, dry skin & nails, hair falling out, no period). I trace my issues back to when I started a high oestrogen birth control pill at 18. I was on it for a short time and when I came off, I stopped cycling naturally and thyroid symptoms slowly started to pile on. Doctors treated me with birth control pills to get a cycle until I took myself off completely. When I was diagnosed my TSH and T4 were within normal, but I had low T3. I started treatment with NDT and feel like I got my life back.

I recently moved to the UK from the US and have had to switch to Levothyroxine because my GP won't prescribe NDT. After 3 months of treatment, my symptoms came back and my period stopped. Luckily he tested my T3 and it had dropped again. He did start me on 15mcg of Liothryonine 3x daily which made a world of difference and my period came back. It is a year later and I am once again struggling with fatigue and thirst and intermittent periods. This might be linked to my highly stressful job though as I feel better on weekends/holidays. I've stopped drinking caffeine which has also helped reduce symptoms of fatigue and thirst.

I recently switched to a female GP and she referred me to an endocrinologist to see if there was anything else going on as we start to try for a baby. She was also concerned as my TSH is suppressed (has always been since starting tx). The trip to the Endo was horrific and I've been in tears/panic since. He rolled his eyes at the mention of T3, questioned that I ever had a thyroid issue in the first place because my TSH and T4 were within range T3 wasn't too far under the norm. Like so many doctors, he started talking about antidepressants and ways to manage stress (I'm already working on that).

I am trying to find support in the area that will treat ME as a person and prescribe based on my symptoms, not just my numbers My GP seems supportive so I am hoping she will work with me and not against me despite this man's report/recommendations, but I am afraid she'll go with the "expert." I wanted some input from other members on here:

1) Does anyone know of good private endocrinologists in the London/Windsor/Bracknell/Reading area who would treat T3 and prescribe NDT?

2) For those on NDT, are your T4 and T3 both in range? What about TSH

3) Can anyone else link their struggles back to a birth control pill?

4) Does anyone else have a suppressed TSH? Some say that's the goal, others say it indicates over treatment.

5) We are hoping to try for a baby soon and I'm scared about my thyroid and pregnancy. Any tips?

6) Is it worth getting the gene test for DIO2 if my labs consistently show low T3 despite adequate T4? (indicating issue converting)

Right now I am on 100mcg Levothyroxine and 20mcg of Liothyronine (10 first thing, then 5mc at 11:30 and 5mc at 3:30). I do think I am slightly over treated but would like to drop my T4 meds first and keep T3 as my main treatment. I think I also struggle with reverse T3 and that I have the DIO2 gene. My most recent labs were the following (note I took my medication that morning)

TSH - <0.02 (0.27-4.2)

Free T3 - 6.1 (3.9-6.7)

Free T4 - 15.3 (12-22)

[Clutter]

Welcome to the forum, CCheale.

Email [e-mail] for a list of member recommended endos. You will have to check with their offices whether they prescribe T3 or NDT prior to confirming your booking.

You aren't over replaced. TSH is suppressed which is fairly common when taking T3 or NDT. FT4 and FT3 are both within range so you are not over medicated. My TSH has been suppressed <0.01 for 5 years but FT4 and FT3 are within range (lower than yours). My endo has reduced dose a couple of times to attempt to raise TSH to 0.05 but it didn't budge and refused to agree further dose reductions.

If the DIO2 gene is impairing T4 to T3 conversion there is no need to stop taking T4. Adding T3 to T4 over comes poor conversion as evidenced by your very good FT3 6.1.

NDT isn't licensed for use in the UK so it is rarely prescribed on the NHS. Most members using NDT have a private prescription or buy on the internet and self medicate.

Hypothyroid women are usually encouraged to take Levothyroxine only during their pregnancy.

[CCheale in reply to Clutter]

Thank you so much for the reply Clutter.

Last time I tried to reduce my Levothyroxine to 75mcg I ended up with the T4 at 12 and no movement in the TSH plus symptoms returned so I went back up to 100mcg and felt better. Is it possible to refuse medication decreases? I am afraid of being forced to reduce my dose or stop the T3 altogether. My husband feels that won't happen, but I feel at the mercy of a doctor to continue to prescribe it. The endocrinologist hinted he would want to take me down to 50mcg Levo and 7mcg Lio, with the goal of stopping my replacement altogether and starting me on antidepressants!!! As if they don't have their own horrible side effects!

Is it worthwhile getting the gene test so I have more credibility with doctors?

I can most likely get the NDT from my old doctor in America. Are you on NDT? I just need a local doctor who will monitor me and order abs if I do make the switch to the NDT. At this point I am happy to continue with the T4 and T3, I just don't want them to take away my T3

Good to know about the pregnancy, which also suggests maybe it is worth sticking to the Levothyroxine and Liothyronine for now?

[Clutter in reply to CCheale]

CCheale,

It will depend on your doctor. You can't force a doctor to write a prescription for a dose s/he thinks is damaging. I told my endo I would buy on the internet and self medicate if she reduced my prescription further and she left it alone.

Why don't you change your endocrinologist. I don't think psychiatry is part of endocrinology training so I don't know why he thinks antidepressants are preferable to thyroid hormone.

I don't know that having the DIO2 impairment adds credibility. If it did, it would surely be available as a NHS test? I doubt many doctors understand gene testing.

There is a problem with practices and CCGs stopping T3. British Thyroid Association have issue the following statement: british-thyroid-association...

NDT is simply T4 + T3 so if your GP monitors you on Levothyroxine and Liothyronine s/he won't even know you are taking NDT unless you say so. Alternatively you can order your own labs via thyroiduk.org.uk/tuk/testin...

I take T4 + T3.

[CCheale in reply to Clutter]

I agree on the antidepressants! And I'm a psychotherapist so I think I have more knowledge on that than he does! He is the only endocrinologist I have seen so I need to just find another one for a second opinion. I am debating about seeing a female within the same trust or do we pay out of pocket for private?

Spoke to my GP and she seemed reassuring but also watched what she said. She said she can't trump expert opinion, but we can take what he says with a grain of salt and treat me as a person not a number. She also reinforced she can't force patients to do something but when using T3 they have to work with specialists. She said we will wait until his report comes back and go from there.

That article is so frustrating as it shows America and Europe both recognise a need for T3 and T4 tx. Hopefully it means we will catch up soon?

When I was on my NDT, my T4 was consistently low so I worry that might be flagged. Also, she wants to get my TSH up.

Do you use a private endo or NHS?

[Clutter in reply to CCheale]

CCheale,

Patients in England are entitled to choose the specialist they want to see. Email [e-mail] for a list of member recommended endos. You can post a question asking for feedback on anyone you are interested in seeing if you ask for replies via private messages.

FT4 is usually low when taking NDT or T4 + T3 because getting T3 direct means higher levels of T4 don't need to be stored for conversion to T3.

Doctors targetting TSH to a certain point in range are why many patients are under medicated. There is no problem with suppressed TSH as long as FT3 remains within range.

[CCheale in reply to Clutter]

Clutter,

You have been so unbelievably helpful! Thank you so much. I am feeling so much better and confident that I will not have to go back to a life that felt unbearable due to my hypo symptoms. Will email Louise now for a list of recommended endos.