Help, struggling with Hashimotos : Hi All... - Thyroid UK

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Help, struggling with Hashimotos

I44T39 profile image
9 Replies

Hi All, firstly thanks to anyone who has helped me in this forum, my girlfriend set this account up and has been in contact with some people who have been very helpful and kind, so thank you again.

The reason for me writing today is, to be honest, I am struggling, I am a 41 year old male and have been diagnosed with Hashimoto’s Disease, I was only diagnosed a year ago, but struggled for 10years prior because the NHS refused to believe I was ill. I would really like to hear from any other men who may have been diagnosed with this, as everything I read it only ever mentions woman. I take NDT because the levothyroxine I was continuously given by my GP, in ever increasing dosages, just made me pass out, and had a adverse effect on my blood platelet levels. Even though I am on one and a half grains of NDT, to be honest, I really don’t feel it does much, I have increased it, and decreased it, but much to the same effect. I have tried various diets but again, nothing seems to be effective.

Would be great to hear from any men (or indeed anyone) who may have some advice, or indeed who just need support, as I am aware of the daily hell people who suffer this miserable disease go through.

Thank you for taking time to read this

Tony

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I44T39
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Marz profile image
Marz

healthunlocked.com/thyroidu...

The link above takes you to your last post with results - but sadly no ranges :-( Difficult for members to comment without them.

Hashimotos is known to trash vitamins and minerals - so the following must be tested - B12 - Folate - Ferritin and VitD. I notice you are taking Iron - has it improved your result ? Thyroid conversion from T4 into the Active T3 needs a good Iron level as well as the others mentioned. Iron best taken with VitC to aid absorption.

I am not a Doc and also female ! I think there are many men with Hashimotos - my husband included - who was not diagnosed until he was 73. Men are more inclined to believe their Docs and go along with other treatments for prostate or whatever. Us girls - well we like to dig and dig like a dog with a bone !!

I44T39 profile image
I44T39 in reply toMarz

Hi I’m Tony’s girlfriend,

I wrote this post over a year ago...

He was just trying to reach out to people, someone, anyone with Hashimotos who goes through the daily hell he goes through...

He just wanted to speak to people for support really.

Anyway an admin has removed his post because I didn’t think he’d posted it properly so I posted it again, anyway the admin removed both posts which is really unhelpful..

Tony is only 41 and has an awful time daily due to his health I told him to write the post, I was hoping there might be someone out there another man going through what he goes through.

Thank you for taking the time to reply.

Imogen

SeasideSusie profile image
SeasideSusieRemembering in reply toI44T39

Anyway an admin has removed his post because I didn’t think he’d posted it properly so I posted it again, anyway the admin removed both posts which is really unhelpful..

No posts have been removed. The first two have been closed to replies but they are still visible on the forum with a note to explain that they have been closed due to duplication. There were no replies to either of those posts and this most recent one has been left open for replies.

I44T39 profile image
I44T39 in reply toSeasideSusie

Thank you...

Marz profile image
Marz in reply toI44T39

The post above - to which I replied - was only posted yesterday and not a year ago ! Do you have the results with ranges ? You are legally entitled to have all results from your GP and surgeries should now have on-line access - so worth asking ...

I44T39 profile image
I44T39 in reply toMarz

Hi Marz,

I was referring to the link of my previous post you posted that was posted over a year ago with his results etc...

Tony self medicates with NDT because the levo made him so ill... his GP was so angry that he stopped taking the levo and was taking NDT supplements etc instead that he refused to see Tony anymore...

We are currently waiting for the NHS to investigate the surgery who also gave Tony completely the wrong diagnosis and just kept giving him very high doses of levo and ignoring the fact this made him feel worse... Tony suffers chronic headaches so they also used to give him crazy amounts of tramadol at one point he was taking 12 or more a day, they just didn’t care...

We went out to Tenerife for cheaper private medical where they gave him many blood tests and tested him for absolutely everything as well as scans and they diagnosed the Hashimotos...

Thank you for taking the time to respond to us x

Marz profile image
Marz in reply toI44T39

Yes we read here daily of the unkind treatment within the UK system. I live in Crete - you may have clicked onto my username to read my Bio - so you may already know my story. We too have thorough blood testing - mostly private but very affordable.

Did they test the B12 - Folate - Ferritin and VitD in Tenerife ? These levels are usually very low in people with Hashimotos and can lead to endless symptoms. B12 is good around 500 - Folate and Ferritin good around mid-range and VitD around 60 if tested in ng/L and 125 in the UK. When optimal these can help relieve so many symptoms and help the thyroid meds being taken - top work more effectively in the body.

Private Testing is available in the UK - see link below. Click onto About Testing in the Menu ...

thyroiduk.org

Exeter General Hospital have also set up Private Testing at a very reasonable price.

EDIT : bluehorizonbloodtests.co.uk...

Marz profile image
Marz in reply toI44T39

Yes I quite understand - BOTH hubby and I have Hashimotos. I asked you for the ranges of the results posted in the above link - labs do vary. Ranges are figures in brackets after the results.

Also I asked if vitamins and minerals have been tested ? - so important to know the levels. I think only the duplicate posts were restricted to reduce confusion. I think there has been little response due to lack of results with ranges. Without information we would be guessing.

Many of us have struggled - after a lifetime of illness I was not diagnosed until I was 59. You can click onto my name above and read my Bio ...

Happy to help but need more info ... 😊

DaddyCool2001 profile image
DaddyCool2001

Hey Tony

Rob here. I only just got my hasthimoto diagnosis last week so not much help with advice I’m afraid.

I too have struggled with symptoms for many years, such as depression, fatigue and weight gain, bouncing from one diagnosis to another.

I’m currently off work with fatigue and praying that this tiny little white pill will be my miracle cure. No pressure levothyroxine!

I’m 47 with a very understanding partner like you. 3 of my siblings are also taking levothyroxine and the other has been told he is borderline.

I’m finding this resource extremely helpful. I’m taking vit D3 and my CBD oil arrived today which I’m hoping will help get me to sleep at night.

Anyway, just to let you know you’re not alone.

BW

Rob

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