Going Down Hill

[carojay]

I have just recently had a blood test done after struggling with my condition for a while. I am in 250mcg of Levothyroxine which had been increased over a period as I was feeling unwell, putting on weight too easily etc. Lately I have been suffering with more migraines than usual and I am the heaviest I have been in many years. Although my diet has not changed. Bloods came back with TSH 0.004 (which I know it low but I function better in that range) and T4 very high. I asked my doctor about T3 but he said that the NHS don’t like to prescribe as it’s so expensive with no real evidence of results. He also said that very soon it will be a case of it being taken off their drugs list all together. He then said that although I do over 10000 steps a day and don’t overeat I should “move around more a get a sweat on” my Levo has been reduced to 200/225. I am at a lose really. Considering a starvation diet.

[Peanut31]

Hi

Your not alone in this thyroid journey

250mcg of Levothyroxine is a lot be taking with not very successful results or relief of symptoms.

Your GP is correct that T3 has get so expensive via the NHS, but the bit about it not being successful is total 💩, and he hasn’t got a clue.

With regards your weight and getting a sweat on, that’s another 💩 statement. You could run a marathon everyday, not lose weight nor sweat.

If he made that statement to me I would not even waste my time seeing him again, he doesn’t want you to get better does he and he knows nothing about the thyroid.

This was one of the things that happened to me, I would never sweat at the gym, in fact many people would pass comment on it. My weight would also be up.

Does he know that if your T3 is low then doing more exercise is not going to help and in fact make you worse.

It’s all because you are not correctly medicated. You may have a conversion problem and no matter how much Levothyroxine you take, it will not help.

What’s happening at the moment is those that have been on T3 via the NHS for many successful years are now being told they can no longer have it. It down to the charges the pharmaceutical company have decided to charge the NHS.

Many are sourcing it privately, and cheaper but, as the demand is getting higher the suppliers are getting less.

In order to help see what’s going on with your thyroid you need your blood results including lab ranges. You are entitled to a copy by law, don’t be fobbed off by your GP or receptionist that you can’t have them.

Once you have them print the results on here and the experienced members can help.

Make sure that TSH, T3 & T4 are tested. If all 3 are not tested I would advise getting bloods done privately (many do)

Medi checks and blue horizon offer this service.

medichecks.com/thyroid-func...

bluehorizonmedicals.co.uk/t...

Best Wishes

Peanut31

[SlowDragon Administrator]

First thing is, do you have any actual blood test results? if not will need to get hold of copies.

You are legally entitled to printed copies of your blood test results and ranges.

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need enhanced access to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up. They can no longer charge for printing out, rules changed after May 25th 2018

Can you add most recent results and ranges for TSH, FT3 and FT4, plus have you also had thyroid antibodies tested

Also need recent results for vitamin D, folate, ferritin and B12. Add results and ranges if you have them

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients

Come back with new post once you have results and ranges on all tests and members can advise on next steps