PLEASE HELP ME!

[Lucylu440]

I am diagnosed with adhd and aspergers but apart from that have always been healthy, fit and very energetic! That was until last year, September 2016 to be exact! I started taking medication for adhd - methylphenidate (xenidate) and had several side effects which after doubling my dose after one week (as directed by gp and psychiatrist) got a lot worse, some of which included chest pain and breathlessness. I stopped taking it and went to docs and they carried out ecg, blood test, BP, hr (all of which should have been done before starting adhd mens, but wasn't!) my bloods came back abnormal: tsh >99 t4 6 (range tsh0.5-5.5 t4 12-22) they told me I had underactive thyroid and said because my antibody was over 1500, I would have it for the rest of my life, sent me away with levo 25 and that was that! To say I was furious was an understatement! But I was too ill to argue at this point. Me and my 3 yo had to move in with my sister because I was just a blob, couldn't get up my stairs, lift my arms even. I took the levo 25mg for 4 weeks and in that time my levels had more than halved. I had to stop at this point because I was due a thyroid scan in another 4 weeks and so endo said I had to. I did this reluctantly as was scared levels would rise again. Low and behold my levels continued to decrease without levo and when I had the scan they found my thyroid was completely healthy and working (as I had iodine uptake). I decided to continue off med and by this point had read so much and cut out coffee and started supplements via d, c, fish oil (gp refused to test vit levels and cortisol, as I had read about adrenal fatigue). Anyway my levels finally got back to within normal range in Feb this year, however I had felt back to normal and started exercising long before this (Nov). In April my tsh had risen to 8 and at the end of April I started to feel some symptoms back. Then May 9th tsh >99 t4 4.6 now feel like I'm struggling again. Asked my endo for an appointment and he refused and told me to wait till after my next blood test in June! Again I am left feeling frustrated and helpless because I don't seem to be getting any answers, they just want to give me a pill and send me on my way. I am on my own with a 3 year old so can't afford to be ill. I have had bloods in the past several times over the years with no problems and have never had any symptoms of hypo. I have never gained weight (never been more than size 8 and still currently this size even with a reading like the current one) When I get the symptoms it's as though they all come at once in the space of 2 weeks and hit me like a brick wall, not a gradual thing. I am now back on 25mg levo which I've been taking for almost a week. Can anyone advise please? And if anyone knows of a good endo in the Northants area could you pass on details to me. Many thanks Lucy

[Marz]

So sorry to read you are having the runaround with the Professionals who should be taking care of you. You have Hashimotos - and as this is auto-immune I am afraid Docs do not seem to know how to treat. When you have Hashi's you can swing from Hypo to Hyper as the thyroid is slowly destroyed by the anti-body attack. ( simplistic terms ! )

You are right about the vitamins - when you are Hypo - and especially with Hashimotos - the levels of B12 - Folate - Ferritin - VitD are usually very low. I would insist on your B12 being tested as ADHD can be connected to low levels. When were you diagnosed ?

b12deficiency.info/signs-an...

Please look at the link above and scroll down to view the neurological signs and symptoms of low B12. Also lots more information there for you including some videos and books.

Have you considered being gluten free ? Also look at the website of Dr Izabella Wentz who has written a good book called - Hashimotos - The Root Cause. You could sign up for her Newsletters to keep up to date with current thinking and ideas.

Sadly Endos do not have all the answers so you need one that really understands the Thyroid and Auto-Immunity. I am not able to help you as I live in Crete - but I do have Hashimotos and a B12 issue. I think you need to increase your T4/Levo and take it slowly - as 25mcg is a starter dose and may not be enough to quell the anti-bodies.

Take good care - keep posting and when you feel well enough keep reading as much as you are able .... it is a long journey to wellness and lots of u-turns on the way but you have made a good start by joining this forum ...

[Lucylu440 in reply to Marz]

Hi Marz

Thanks for responding. I read the link and went to docs, described my symptoms and asked for those blood tests for vits suggested and he has given me the form for those so am really happy! At least that can be eliminated once results are back. I am also going to try to eat gluten free.

You are right about it being long process, I have read various different things since September last year, so many people struggling with this illness. But I feel more positive just taking the step posting on here - thanks for your support and advice,

Lucy

[Marz in reply to Lucylu440]

Have been re-reading the book - Could it Be B12 ? - by Sally Pacholok - I think you would find it really interesting and may help you answer some questions too. I think every home should have a copy

Glad things went well for you with the Doc. Sounds very positive.

[JanePound]

When I took my daughter to a psychiatrist for potential ADHD diagnosis, he also diagnosed her as hypothyroid. Hypothyroidism can present itself as lots of other ailments. Now, 16 years later, providing she takes her thyroid medication regularly, she has enough coping skills not to have to take her ADHD medication all the time. The family joke is that if she wants to tidy her room, she finds her Ritalin.

Good luck and remember you are not alone. The good people on this forum will give you loads of support.

Jane

[Lucylu440 in reply to JanePound]

Hi Jane

Thanks for your reply. I have had ADHD all my life and I can tell you I've found it's a lot easier coping with that than hypothyroidism! Bring back energy and full of life any day!! Lol.

I'm glad to hear your daughter is coping. I will stay positive and hope I can sort this out.

Thanks for the support