My TSH is 7.6 even though I'm on Erfa thyroid 1 grain and have been for a few years now.
Apparently my T4 is within normal range.I haven't got the results to hand as I was called by the GP surgery today , it was a nurse practitioner that informed me.
The nurse practitioner said my last result my TSH was 5 ( they said 'normal' so they didn't inform me) I know that that level is not good for me.
Previously it has been <0.8 ( and they have complained about it even though felt ok)
Is there any reason you can think of why it has suddenly started declining back to the days of prior diagnosis.
If I increased the dose would this suffice in bringing the TSH back to my normal levels or do I need LEvo in addition or something else?
Any advice would be very much appreciated.
Kitty
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KittyKs
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I guess I was shocked at the sudden dip when it had been ok for ages. I really need to get hold of all of my results. My GP doesn't like dealing with the NDT and says she doesn't understand it so I need to sort it out myself.
Hey Kitty - just in case, my levels always drop when I'm ill - flu, cold etc but only temporarily. Were you ill around the time of your blood test. How much time was there between your last dose of meds and blood test?
Also many people have to increase meds over the years as their thyroid fails more so maybe just due an increase as I don't believe 1 grain is often considered full dose - although I'm really not too clued up on NDT to be honest lol!!
Hi Saggy, thanks for your reply. I wasn't ill. I did not have any tablet 24 hours before the test and no food etc. It was done early morning too. I think you could be right about the age thing. The funny thing is when I need to understand is when my brain isn't working at it's best i.e my head feels like porridge lol. Thanks again for your input.
I don't think it's so much about age but if you are autoimmune or hashis (most are) - remember you have an ongoing attack on your thyroid which will slowly over the years become more damaged and produce less and less hormone of it's own meaning an increase in dose is required to cover. I've had hashis since my teens and my thyroid finally gave up completely a few years ago in my early thirties. there are other reasons also
Do you mean you often have brain fog? - have you looked into other things we often recommend on here like getting your Vit D, folate, ferritin and iron, and Vit B12 checked out as many of us are deficient and docs are pants with this so get them tested and post results.
There can be other reasons too, many recommend a gluten free diet for those who are autoimmune. I had terrible brain fog and a sleep disorder until I went gluten free so there are many things you can try yet.
Sorry you have had struggles sounds like you've been through a lot.
I did ask if my iron was ok they said it was good. I've been taking B12 sublingual daily along with D3. I do need to check my Ferritin, and folate Thanks for streamlining those. Really helpful.
Yes you are spot on me describing my brain being like porridge is like brain fog in addition it actually brain feels like mush! Recently my memory was getting terrible plus I started having visual only migraines where I would see Kalidescope patterns only from my eyes( no headache) ( never had before) and I was experiencing regular blurred vision and double vision. I would look at my cat and he would appear to have four eyes lol! Went to GP about it and they sent me for a brain scan which came back as normal ., just treat the migraines all the while my throyid was wonky again and they didn't join the dots.
My GP was supposed to ring me but hasn't and is now away so I'm left hanging about what to do and do it myself. I know they are very overstretched.
I used to see Dr Skinner and he guided me. Now I feel lost things are seemingly going wonky again.
I appreciate you are new to the forum - but never accept fine/normal/ok when it comes to results. Always obtain copies that are legally yours so you can monitor your progress and see what was missed. Also good when posting here to have as much info as possible.
Further testing for B12 is quite pointless as results will be skewed.
How much B12 & VitD are you taking ?
I have read that you do not have Hashimotos - have you been told that by your GP ? We read here that GP's rarely test and also ignore results.
Appologies for reply delay a close family member has been critically ill and I've not been on.
You are correct I should have requested my results and posted them online.
I wrote the post on impulse as I was panicking as my GP was going to be away for a week and I was left no instructions after getting a telephone result that shocked me.
I believe Dr Skinner mentioned I didn't have Hashimotos when I asked him
I increased my Erfa to 2 grains and felt a bit improved over the next couple of days.
Then the surgery sent a note saying I had to STOP the Erfa and get a blood test booked for the next 7-14 days.
I was confused to say the least.
Even though frazzled out with dealing with my unwell relative I wrote a note to my GP telling her how terrible I felt and that I was most unhappy with what had happened, this being for her to read when she was back from leave.
She phoned me today (she is back )
She apologised profusely several times throughout the call for the confusion.
She said she did not understand Erfa and felt like she didn't know what she was doing.That they had contacted an Endocrinologist some time ago about the Erfa but hadn't heard anything back from them.
She mentioned me going onto Levothyroxine only.I said I wasn't sure that was ok for me.She said we could discuss it at appointment this week.
Also I am lactose intolerant and was refused the Levothroxine liquid after a short time by another surgery as they had told me it was too expensive ( even though I had offered to pay for it! ) I never felt fully ok on the Levothyroxine. I ended going to Dr Skinner who prescribed me Erfa.
She said she would look into it for me and was agreeable that I do my own research too and bring it with me.
I told her how terrible I felt since being off the Erfa.
She told me to come in for a blood test tonight. I told her it would be good to have the TSH, T3, thyroid Antibodies, Vit D , Vit 12, Ferritin, folate done. (thanks to this forum! )
She agreed on those but said she had never been successful in requesting getting the T3 done the labs refuse to do it but she would try. She made an appointment for me to go Friday when hopefully my results would be back.
Today I have ordered a thyroid medi check test including T3 and anti-bodies incase she can't get them done, which I will do early morning after they arrive.
I still am off my medication and feel increasingly dreadful.
Hopefully my next post will be the results!! All of them
I would be interested to hear how you get on. I too have visual disturbances about one a month. These affect both eyes and last about 5 to 10 minutes. They call them silent migraines. No-one has made the link to my hypothyroidism.
I have had the latter for 28yrs happily symptom free on 125mg levothyroxine. Then last April my TSH dropped and the docs reduced my medication .Sanctioned by endos at NW London hospital . I have become progressively more fatigued, feeling cold and since last June breathless. At last I have got a 2nd opinion privately and now slowly increasing/ returning my medication towards previous level. Sadly it will take 2-3 months. Be very careful about what they tell you. Good luck.
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