Need some advice please

[SueD777]

Hello everyone.

I was diagnosed with Hashis about 5 yrs ago - picked up by antibodies levels and also said i had nodules on my thyroid. Bloods been tested regularly and always been 'fine' by GP standards (only TSH and Free T4 measured). I was told my thyroid was fine but that I had chronic Fatigue.

5 years down the line after working my butt off to gradually get better my health has taken a huge turn for the worse. I was convinced it was my thyroid after reading up about it and reluctantly in August last year my GP tested my blood again. At last my blood showed that my thyroid was not doing great and so started me on Levo. On 100 at first then 2 months later after no improvement, upped to 200.

I had 2 days of feeling 'normal' and then it all went downhill again. Desperate I went back to GP and asked about testing t3 and my antibodies but after lots of mumbling it seems he can't get that done on NHS. After balling my eyes out for a while he agreed it may be time to refer me.

I have an appointment with endo on Wednesday this coming week and I want to be armed with things to ask him. I'm guessing a fuller blood workup - these are the only numbers I have so far:

TSH - this week it is 0.010 mU/L - was 10 mU/L in August before starting levo

Free T4 - this week it's 19 pmol/L - it was 8 pmol/L in August

Iron is 10 umol/L now (he started me on supplements as he said this was low.)

Ferretin is 106 ug/L now.

The next two results I don't think I've seen talked about before so I've no idea what they are:

Transferrin 2.62 (2.0-4.0 g/L)

Transferrin sat % is 15%

GP seems to think that as all my levels are back to 'normal' that it's just a matter of time before the drugs start to work. So far the ONLY thing that has improved is my bald patches on my head are no more. I'm exhausted ALL the time, I have aches and pains, terrible headaches that are constant, my skin is itchy, I have no control over my body temp and as soon as I become slightly too hot or too hungry I get nauseas. I put on weight just sniffing chocolate. I'm so fed up with it all and needless to say it's now causing me to be really down all the time.

I used to be a PE teacher until this all kicked in so I've essentially had to abandon my previous life.

I would very much appreciate any advice you can give me in preparation for seeing this endo on Wednesday. I'm guessing ask for a complete blood workup including t3 and antibodies? Try some t3 before abandoning levo and asking for NDT?

Thanks in advance for your valuable time.

Sue

[Joburton]

There are people here who can answer much better than I can (especially as the units of measurement for iron are different from mine)... Your TSH and T4 look good on paper but there are other considerations, such as converting to T3 effectively. May I ask if you have had B12 and Vit D tested.

It sounds like you are describing patches of alopecia on the scalp. My husband is allergic to UV light and is consistently Vit D deficient; his hair starts falling out in patches if he forgets to take supplements (which happens more often than it should!)

Good luck next Wednesday, I hope you get all the relevant tests done, especially for antibodies.

[SueD777 in reply to Joburton]

Hi joburton, thanks for your reply. I have had vit D tested but results won't be in till next week. I know my B12 is ok as I also have pernicious anemia so get injections regularly.

[Marz]

Your starting dose seemed quite high - and the increase two months later was also a big jump. It could have been a shock to the system.

Have you been able to research the Endo to whom you have been referred ? Often they are specialists in diabetes - which of course is important - but their thyroid knowledge is limited. You may be better to contact Louise Warvill from Thyroid UK for a list of Thyroid friendly Endos/Docs in your area.

I am not being negative - my thoughts are based on the many people who report back here after seeing their Endos. The stories are often disheartening. You could of course be lucky - so do your research and have your questions at the ready.

Hashimotos is little understood - being an auto-immune issue - so we have to read and learn for ourselves and take the appropriate action. It is important to know your levels of B12 - VitD too and to supplement if needed. Most of us with Hashi's/Hypo are deficient due to absorption issues. Your Ferritin level is good - as is the FT4 ( even without the range - so I am guessing ) - BUT is the T4 converting ??

Diet ? - some people have fared well by going gluten free to reduce anti-bodies.

Private Testing is available through Thyroid UK website - if you cannot have the tests you require. Also remember many Endos are governed by guidelines laid down by various bodies and they do no think outside the box.

I am sorry that like so many of us you have been neglected by the medical profession. Stick with this forum and the knowledge within and you will be better in no time

[SueD777 in reply to Marz]

Hi Marz,

I did research endo before asking for referral as I'm going private as had enough of waiting around. I've got Prof Toft who I've heard good things about through this forum. My B12 is ok as I get injections for it and vit D test due back this week. Thanks for your help

[Marz in reply to SueD777]

As you have quite a bit going on - it would be a good idea to complete your Profile with more information than you gave in the beginning of your post. It saves us all a lot of time. Info re PA etc You can click onto my name and have a read of my edited journey

Wishing you well with your appointment and the Prof

[SueD777 in reply to Marz]

I'll fill in profile now Marz. Thanks.

[Hidden]

Mainly you need the free t3r result to see what is going on. But you may have other auto immune conditions as well as hashis - celiac or autoimmune gastritis for example.

You have untreated hypo for a long time so the improvement will take a long time too.

[SueD777 in reply to Hidden]

Hey Aspmama,

Yes, will defo be pushing for t3 to be tested to see what's going on. I have pernicious anaemia as well so I know I'm already dealing with one other autoimmune.

When you say a 'long time' are we talking for the drugs to start working? Will it take longer than the 6 months I've been on levo?

I have had some gastric issues but treating with probiotics and digestive enzymes has made an amazing difference. Thanks so much for your help.

[Hidden]

people on this forum regularly say it took a year for them to get better. but i think the experts here will say that the 100 leap in dose was too big a jump at once. with two serious conditions u definitely needva good endo, yr gp sounds lost.

[SueD777 in reply to Hidden]

gotcha, thanks Aspmama