I've been on Levothyroxine all of my life, as I... - Thyroid UK

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I've been on Levothyroxine all of my life, as I was born with congenital hypothyroidism.

Amyflo74 profile image
6 Replies

I have zero thyroid at all. I was at Great Ormand street hospital as a child, then discharged to GP care as a teenager. I've been taking 150mcg since then (I was advised that my dosage would change in pregnancy).

As an adult I've tried in vain many times to get my dosage changed, unsuccessfully. The difficulty I have is that I'm overweight - foggy headed, lethargic, poor memory - and have always been like this; I wonder if this is symptomatic of my condition or just my personality as I've no benchmark. Is there anyone else out there with a similar disposition to me? Also, wondering if anyone else has experienced any fertility issues? (2 miscarriages at 6 wks). Thank you.

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Amyflo74
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shaws profile image
shawsAdministrator

I am sorry you have had such poor care with the problem of having no thyroid at all.

I am not medically qualified but all the symptoms you state all point to hypothyroidism and not your personality. You need good medication.

If you email louise.warvill@thyroiduk.org who has a list of NHS Endocrinologist/private doctors one of whom may be near you.

Fertility as well as all female problems are all connected with the thyroid gland.

Can you get a copy of your latest thyroid gland blood tests, complete with the ranges and post on another question if you don't have them to hand for members to comment

The following is a link but links within may not work as it is an archived site. You can also look at other topics at the top of the page.

web.archive.org/web/2010103...

In order to recover our health we have to read and learn as much as possible.

Amyflo74 profile image
Amyflo74 in reply to shaws

Hello, thank you. Yes I have got the list. I made an appt with Dr Avery, but cancelled it when I found out I was pregnant (for some reason). I am seeing an Endocrinologist tomorrow (which was set up because of my pregnancy, which I have now lost). So I look forward to quizzing them tomorrow, they sent me letter to increase my thyroxine to 225mcg though this was not done until approx wk 9/10 of my pregnancy, by which point it was too late.

I have also seen Dr Peatfield, who I researched carefully before I saw him; however I had little confidence in his advice, especially since he seemed to talk directly to my cleavage.

I will try to get my recent blood results and post. Thank you.

Marz profile image
Marz in reply to Amyflo74

...when you are pregnant I have read here on this forum that it is important to have your TSH monitored almost monthly. Some Endos may understand the connection - others may not.

What was the advice that Dr P gave you ? I found him to be very helpful and his treatment protocol helped me have the confidence to learn for myself and move forward.

Hope all goes well with the Endo tomorrow....

Amyflo74 profile image
Amyflo74 in reply to Marz

Hi Marz, I know, well I thought that too, I've my first endo appt tomorrow - which would have made it wk 13 of my pregnancy (which I feel is really late). Ive only had one blood test up to now and it was at about 7/8wks. I hope tomorrow I can ask them what the proper protocol is - at least I know for next time to up so that I can up my meds as soon as I fall pregnant (as unpleasant as that was - it made me feel like I was taking amphetamines for a few weeks).

Dr P, well I was really disappointed. He proposed that I take Nutri thyroid and Nutri Adrenal, no mention of NDT atall (?!) and that I wean myself off the thyroxine. I was dumbfounded. I use these two products in my work myself, and was already taking Nutri thyroid, so was really surprised that the thought these 2 products would be enough to support me.I genuinely feel that he really hadn't looked at my notes atall; as this advice would have been more reasonable if I had some thyroid function, but I have none at all. Plus, as I mentioned, he could not stop talking to my breasts. I just lost confidence in his professionalism.

Marz profile image
Marz in reply to Amyflo74

Oh dear - that is the first time I have ever heard anything negative about Dr P. I think when he was talking about weaning off the T4 the next step would have been T3 only. This seems to have been his protocol of late. As has happened with me. Whilst that was happening the Nutri-Thyroid may have been of help. Having the Adrenals fully functioning is also part of his regime - they need to be working well for the Thyroid hormones to work effectively. Expect you know all this ! Best to cover up the boobs when dealing with the boys - I too have a cleavage but keep it hidden :-)

Did you fill in the paperwork/homework ?

Wishing you well....

shaws profile image
shawsAdministrator in reply to Amyflo74

I am very you had another miscarriage and hopefully a new Endo will medicate you properly so you will have a successful pregnancy.

Best wishes.

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