Sunday reading

[Joant24]

I know I'm dithering about but I've been sitting here researching information so I can write an informed letter to my GP.

I have just read the NICE guidelines for diagnosing and treating hypothyroidism and nearly cried. There is no way I'm going to get a trial of Levothyroxine and if they were prepared to think about it they would have to do the blood tests to show levels out of range twice 3 months apart!!!! That's another six months feeling like I'm fighting to say awake in a parallel world. Also, I've never actually been out of range just on the edge.

I'm still going to write the letter but I am also going to source medication myself and if they poo poo me yet again I shall be ready to roll on my own. I can do this as I know I have the expertise here to help.

So where does one get levothyroxine from? I did a quick google and came up with a UK site that said I had to have an online chat with their pharmacist to make sure I needed the medication in the first place. Do they take the same view as the GPs?

Having been quite gung ho about taking matters into my own hands even decisions like "where shall we walk the dog today" are beyond me so deciding to self medicate is quite dauting.

Thanks in anticipation. xxx

[SeasideSusie Remembering]

Joant24

So where does one get levothyroxine from? I did a quick google and came up with a UK site that said I had to have an online chat with their pharmacist to make sure I needed the medication in the first place. Do they take the same view as the GPs?

I've never used one of these online places but I am almost certain they wouldn't prescribe with an in range TSH, they would still be subject to the NHS guidelines. I could be wrong and you could try them but I think you might be wasting your money.

People buy their own thyroid meds from overseas and we can't name sources on the forum, only in private messages.

[Joant24 in reply to SeasideSusie]

Thanks for letting me know, I thought it would be too easy.

[pennyannie in reply to Joant24]

Hello Joan ;

Reading your history you say you were treated with an over active thyroid in your 20s.

Can you expand a bit on this - did you have antibodies run - either for Graves or Hashimoto's which are both auto immune diseases that tend to attack the thyroid ?

What treatment did you have back then ?

[Joant24]

I’m sorry to say I was very naive about my treatment back in 1983. I was trying to get pregnant and struggling so GP did tests and I was whisked off to Thyroid clinic asap with what the dr said was a very overactive thyroid. I had carbimazole for 6 months and was part of a research study so had a very close eye kept on me. I assumed everything was okay afterwards as I left at the end of the study pregnant. (I would hasten to add our son is the spitting image of his Dad 😂😂). So not sure about antibodies etc. I do know I have antibodies now and a family history of thyroid problems on both sides.

[Essexlil in reply to Joant24]

Hi my mums family all have autoimmune probs, mainly thyroid but I’ve also got Sjögren’s and my mums cousin had Lupus, on my dads side his mum had Rheumatoid Arthritis. No wonder I didn’t escape,I just hope my daughter takes after her dad!

My mum had an overactive thyroid in her 30’s, 1965 ish. She was treated with radioactive iodine and was fine until her 50’s when she began to have underactive symptoms. Her blood tests came back normal and when she asked her GP to send her to a consultant as she felt so ill the GP said you’d be wasting their time. My poor mum plodded on and eventually got put in levothyroxine. She then discovered that after having an overactive thyroid it’s very common to go underactive later in life. Mum was never really well even on levo, maybe it was a T3 problem but they didn’t listen to her. She begged for a higher dose and was given it and she was scared of having it reduced. Her endocrinologist warned her it was too high and it could be dangerous. I’m not scare mongering, but you do have to know what you’re doing with levo as my dear mum developed arrhythmia and sadly passed away with a sudden cardiac arrest. She’d been over medicated for about 8 years.

My poor daughter in law now has pregnancy induced Hashimotos and she can’t get well on the dose the drs have her on - she’s got carpal tunnel, weight gain and swollen legs, ankles and feet. It went undiagnosed for about 6 years so I think her symptoms took hold. Her mother is Spanish and they can buy levo over the counter. She’s brought some home in case she wants to take matters into her own hands and increase her dose. I can understand why, but have warned her it can be dangerous to be over medicated. It’s all so very complicated and not straightforward like NHS make out, I think we all need to see an expert in the whole range of problems but there doesn’t seem to be many of those about. Hope you feel better soon and I think you definitely need a trial on levo as drs used to go on symptoms alone without blood tests years ago,

[Joant24 in reply to Essexlil]

Thank you so much for sharing. I shall be cautious don’t worry. Xx

[tattybogle in reply to Joant24]

Joant24 just alerting pennyannie to your reply . (If you want to reply to a particular persons comment . you need to use the blue reply button directly under their comment ... if you do that, they get notified of your response .. but if you use the reply button right at the bottom of the post they don't know you replied to them.

[pennyannie in reply to Joant24]

Well - there's likely a genetic predisposition whether you have Graves or Hashimoto's AI thyroid disease,

It is important to know which auto immune disease you are dealing with as they should not be treated with the same medication - though we find, on this forum, this can happen.

Graves Disease is said to be life threatening if not treated as your T3 and T4 levels go very high, and keep rising, and need to be blocked and this is generally when Carbimazole an antithyroid drug is initially prescribed. for around a 15-18 month window

With Graves there is generally talk of having your thyroid removed or ablated if your T3 and T4 - take off again.

Hashimoto's AI thyroid disease just attacks the thyroid and ultimately the thyroid becomes disabled and too damaged to support you well and thyroid hormone replacement is prescribed.

As the glands production becomes erratic, you do experience transient hyper type symptoms but not too high T3 and T4 levels, and once the attack is over, your T3 and T4 levels drop back down by themselves. However with every attack, and you are left a little more " hypo " than before and find you can't cope without thyroid hormone replacement.

So, as you will see, initially symptoms of both AI diseases are similar and it is necessary to run an antibody test, for Graves, which has the unique antibodies, expressed as either a TSI ( a thyroid stimulating ) and or TRab ( a thyroid receptor blocking ) antibody.

So, do you have any paperwork from back then - or have on line access to you medical records and can find the answer ?

Graves antibodies wax and wane throughout one's life, so it may not be relevant now to run another test.

[Joant24]

There was never any mention of thyroid removal or ablation at the time just Carbimazole for six months starting with a huge dose reducing over the period and weekly blood checks and lots of ophthalmic checks. It was pretty intense. We don’t have online access at our surgery. To be honest it was a nightmare time as my mum had died three days before my appointment so there was a lot going on.