I'm new and clueless having been diagnosed Hypothyroid 23 years ago!

[CILE]

I was diagnosed at aged 29... GP did a good job of making me feel like it was no big deal so I just took my prescription and started on Levothyroxine for my underactive thyroid. Very soon I was on 100 mg which throughout my four pregnancies was increased to 150 mg returning to 100 after giving birth. Currently on 125 mg.

No major issues other than fatigue and low moods which I just soldiered on with. 9 years ago after donating chord blood after giving birth, I was gob smacked to be told I had Hep C. Having never taken drugs of any description to this day it is a mystery as to how I contracted this disease. Thankfully HCV treatment (interferon and ribavirin) although seriously tough to go through was successful. For this I feel very blessed.

Now I am going through the menopause which I am finding the most difficult of all. I am on HRT Tiblone 25mg as I could not tolerate the chills I was suffering. I have now lost 30 - 40 % of my hair, am suffering increased problems with allergies and sinus problems, dry eyes for about 6 years. I also had Bit D supplements as my Fit D was seriously low last year.

Its only now with symptoms particularly hair loss I feel the need to tackle my health head on. I am gathering my research on NDT as an alternative treatment for my thyroid but wonder if thyroid problems are worsened by the menopause? How do I know what issue is causing my hair loss? (thyroid or menopause) What test should I ask my GP to run. I saw an endo consultant 29 years ago. Surely it would be good to have a review?

Any other advice greatly appreciated.....

[bluebug]

Hi there,

First thing you need to do is get a copy of your recent test results WITH ranges. This is your right under the Data Protection Act 1998 and the only reason you need to give for wanting them is that they are for your own records.

Once you have them post a new thread the results with ranges, and other posters will comment.

[CILE in reply to bluebug]

Thanks for your reply.

I've requested copies which I'm collecting this afternoon. Last tested August 2015... Think it's time for a review!

[SlowDragon Ambassador]

As well as thyroid test results, recent tests for levels of vitamin D, folate, B12 and ferritin would be helpful

Also do you know if you have autoimmune thyroid called Hashimoto's. Have your antibodies ever been tested? If so were they high?

[humanbean]

First, the bad news ...

Seeing an endo is usually considered unnecessary. Hypothyroidism is normally treated by GPs, and in this day and age with limited budgets few GPs would be prepared to refer you without a very good reason. Even if they agreed to refer, your local endo department could still refuse the referral.

If the endo department did agree to see you, the wait for an appointment might be months or even over a year. Most endos know almost nothing about the thyroid - they are mostly diabetes specialists. They probably wouldn't alter your dose of levo, but if they did increase it your GP isn't obliged to follow their advice. There is the possibility an endo might decrease your dose of levo - and your GP would probably be glad to follow that instruction to save money.

The good news...

We can help! We can tell you about optimal levels of the basic nutrients, offer suggestions on what to supplement with. We can advise on how to get copies of blood test results from the NHS or get copies of medical records. We do help quite a lot of people to feel a lot better.

Doctors spend very little time learning about the thyroid during their medical training. They have 50 million things to learn and the thyroid is very low down in the pecking order. After all, most of the patients with underactive thyroid problems are middle aged and older women, why should they waste their time? **Heavy sarcasm**

But patients can learn. They have access to vast amounts of info on the web these days, as well as patient-to-patient support. So patients are "doing it for themselves" and in many cases improving their health enormously.

Welcome to the forum.

[CILE in reply to humanbean]

Thank you so much for your reply!

Last tests were done in August 2015, collecting this afternoon. When I request a battery of tests other than those above are there others I should ask for?

[humanbean in reply to CILE]

The most helpful tests are - in no particular order :

TSH

Free T4

Free T3

Thyroid Peroxidase Antibodies

Thyroglobulin Antibodies

Serum iron or a full iron panel if you can get it.

Ferritin (iron stores - part of a full iron panel)

Haemoglobin or a full blood count if you can get it.

Vitamin B12

Folate

Vitamin D

You may have had some of these done quite recently, in which case you need to ask for copies of the results including reference ranges. Then copy them into a new post for feedback. Don't be surprised if your doctor says no to some or all of these tests.

[CILE]

How often should you check your levels...annually - bi-annually?

[steviecat in reply to CILE]

In your case, CILE, as soon as possible. When you have the results, members will be better able to offer advice with regard to a future pathway.

[humanbean in reply to CILE]

If you are low in iron, and are taking iron supplements, then be aware that high iron levels are poisonous. So testing is required to make sure that iron and ferritin levels don't get too high. Doctors won't like testing often, so you may find you have to pay for your own testing.

Once levels are where you want them to be then you have to reduce your dose of supplements enough to maintain that level. Finding the maintenance level can be difficult and testing occasionally is necessary until you find the right dose for you.

But many commonly supplemented vitamins and minerals aren't that dangerous.

For example, high (over the range) levels of vitamin B12 aren't dangerous - they are just a waste of money for many people.

I do private testing for the basic nutrients on average about every 9 months now. But if there is a good deal available and I don't feel great I may do it more often.

[Treepie in reply to CILE]

You may find the GP will only test TSH .You will probably be better served going to Blue Horizon or Medichecks for a package of tests.

[humanbean in reply to CILE]

I forgot to say in my earlier reply, that when taking iron supplements to raise levels of ferritin and iron, it is a good idea to do an iron panel at the very least, every 3 - 4 months, although it might be possible to reduce this once you know how fast your iron/ferritin levels go up. If your iron/ferritin goes up very slowly then testing every 6 months would be okay.

But beware... If you change something which alters how quickly you absorb iron you will need to test more frequently.

My iron and ferritin rose very, very slowly for about 18 months. Then I gave up gluten and my ferritin suddenly increased much faster than it had been doing. Luckily I tested and caught the rise and realised I had to reduce to a maintenance dose.

[jgelliss]

Also if I may add Iron supplements must be stopped 5-7 days prior to running labs . Biotin also needs about 24 -48 hours to stop prior to testing .

[CILE]

Thank you all for taking the time out to post.... I'll see what tests my GP is willing to do and organise others privately if necessary. Once I have results I will re post ....

[jgv2018]

Hi CILE

I really sympathise. I have had Hashi's for over thirty years and have also found things a whole lot worse since I started the menopause. I'm five years into that now and still having symptoms, in my case hot flushes and insomnia and also weight gain. One thing in your post caught my eye - you mention hair loss - I got that really severely when taking TEVA levothyroxine which has manitol as an added ingredient. I was taking that for four months and it made me really ill with massively raised BP. Having been off that for three months my hair has just started regrowing. No one in the medical profession has ever confirmed that thyroid symptoms are made worse by the menopause, but I'm not sure I believe them ! I also wonder if menopause may interfere with conversion from T4 to T3, but as you will know from posts on here, it is now virtually impossible to get T3 ( even those who had it in the past ). If you get any joy on a thyroid menopause connection I'd love to know. Best wishes.