Can anyone explain as not getting any answers from doctors ?
1 year ago i went to the dr's with issues with my heart and extreme dizzy spells, the drs advised i was taking too much levo ( tests at the time stated tsh 0.01 ft3 5.8 & ft4 15) the dr reduced my levo from 200 to 187.50 and no change to blood tests or how i felt as time has gone on i have been backwards and forwards to dr's each time getting bloods checked, my tsh/ft3/ft4 have never adjusted even when they lowered me down to 150mg levo. Not happy with the treatment and the fact they couldnt explain why i was now also showing signs of being hypo i argued for a ref to consultant. I saw her in oct and within 10 mins she said she though it was vit d deficiancy and my thyroid was fine - tests completed and treatment started and i started to feel a little bettet however hypo symptoms seemed to be getting worse. I went back to the hospital in jan saw someone different and he retested tsh/ft4/ft3 and again no change at all ..now they have lowered my dosage of levo again stating over replacement. I have no symptoms of hyper only hypo and no one can explain why my bloods dont change, has any body been though this before? If so why do my bloods not change? Im back in april at the hospital and could do with some information so i can challenge the dr if need be.
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Could you put your ranges with your results please as they differ from lab to lab? Your FT3 on my range would make it over range, my top is 5.7, though on many ranges it's under.
Ft3 is 5.8, tsh is 0.01 ( i feel better at the lowest range and have done for over 10 years), i'm not sure what ranges the hospital use unfortunatly as everytime i have queried they refuse to answer. Consultant states all ok and one of her team state over medicated based solely on tsh result
If you ask them for a print out if should be on there. If not then ring the Pathology lab for the ranges and they should tell you! How can the Endo's treat anyone if they don't know the ranges? Words fail me!
First thing is do is get hold of copies of 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, you may need to apply for 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 make nominal charge for printing but many will do so for free (£10 max)
If Thyroid antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's
Essential to test vitamin D, folate, ferritin and B12.
Always get actual results and ranges. Post results when you have them, members can advise
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels can affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's gut connection is very poorly understood
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Do you always have your blood tests at the very earliest possible, fasting (you can drink water) and avoid levothyroxine for 24 hours before blood test and take afterwards?
You definitely need to get copies of your own results and examine them. Doctors only know how to read them at a very basic level. If it's true you've got anything unusual going on you will have to figure it out yourself, because Endos only deal with the most straightforward cases.
But it's much more likely that nothing unusual at all is going on, and your Endo just doesn't know how to read the most usual patterns. They often make up weird stories to tell patients when they don't have enough knowledge!
If you're struggling to get copies of these bloods from your doctors, an alternative is to go to Medichecks or BlueHorizon and order finger prick mail order tests. You definitely need a complete thyroid panel, which consists of TSH, freeT4, freeT3, and thyroid antibodies. You would also benefit a lot from the vitamins, too. Ferritin, folate, vit B12, and vit D.
We definitely need to check how that vitamin D deficiency is progressing (these are also handled very badly in the NHS, but if a doctor tells you this is an issue it means it's become very extreme), and there's a good chance you have other low results, too. These can all cause symptoms.
You should be able to get all these tests bundled together for well under £100.
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