Return to Dr with Hypo- Part 1 with TSH results

[cal1971]

I wrote a few days ago that I was going to go back to my Dr armed with thyroid info. As usual, she told me that my TSH was in range last time, and I will have another blood test next week.She said she wasn't allowed to do a full T3/T4 test, just the TSH - the standard response..

Knowing that this will come back within range, I asked if it did would she refer me to an endo, and she said yes, so that's positive.

She did try to fob me off with stuff about CFS symptoms being the same etc etc but I told her i was convinced it was my thyroid now. She even said I may be taking too much levothyroxine?

So news as expected, but at least she will refer me.

I got a print out of my TSH over the years and they are as follows:

2003 - 0.7

2004- 0.8

2005- 1.4

( gap as I moved house....)

2010- 0.7

2011--1.0

2012- 1.0

I have read that a range between 0.3 and 0.5 has been proven as a better count to go for- does anyone have any ideas about this?

[Hidden]

The ranges vary between the labs, but even given that you can see that it has been pretty low the whole way.

A lot of people would feel 'well' with that sort of reading - providing their T4 and T3 are towards the top end of the ranges.

I would suggest getting some private testing done to check the other readings too, if your doc will definitely not do them.

Louise

xx

[Jackie]

Hi As Louise says, very important to have T4 and Free T3 tested with the TSH. You need these tests for a proper diagnosis, this was always done but now some docs are trying the cheap route by only doing tSH, it is no good on it`s own.On line tests are very easy, no authority, results to you, to show to who you wish, I use Blue Horizon for the 3 tests as NHS here not "allowed"to do a FT3 test any more, costs!Blue horizon is the same Lab all the private hospitals use, much cheaper and DIY, they are really a lab TDL and so are well recognised by docs. If anything glaringly wrong their Harley St. doc tells you, They are all checked. thyroiduk.org.uk/tuk/te ( you may need to cut and paste). I use that or the Blue Horizon main site, more on there.. For the 3 tests, i pay £61, that includes a £10 discount if you quote TUK 10. All done by post and on line.

I hope that helps.

Jackie

Not sue if you know but to reply to a specific post click on "Reply to this" under that post, or we will not normally know.

[Nicola-Jane in reply to Jackie]

My ft3 will usually be done at a push but did you know it is the consultant pathologist who has the say as to whether labs are carried out or not? I went to see my endo last Monday armed with all the STTM info and told him that after 17 years of being ill I wanted a bunch of labwork done, instead of a £50 t4 test every 6 months. I was surprised when he agreed and wrote them all down for the blood form, only to be told he would be calling me to let me know if the pathologist would agree!!! How can someone who does not know you as a patient, know your history or symptoms have this affect on your well-being? All down to budget. I am disgusted. I am waiting to hear what labs they will do and the rest I will have done private but a letter of complaint will be sent to the PCT!

[Heloise in reply to Nicola-Jane]

Nicola, are you aware of the different labs? ....Genova Europe and Blue Horizon? I checked their price list for thyroid bloods and found the more tests done at one time the more economical. I think they will do all of them including reverse and both antibody tests for 126 pounds. I don't know within the NHS if it is the same but you could have them done yourself if you feel it would be worth your while. I think TUK also gets a discount.

[Nicola-Jane in reply to Heloise]

Hi Heloise, yes thank you I am aware. I am having my 24hr saliva test done with Genova and am waiting to see what labs the nhs will pay for and anything they won't, I will have done privately. I have an appointment on Thursday (hopefully) to see the consultant pathologist! Apparently this is par for the course, probably to question me as to why I should be tested!

[cal1971 in reply to Jackie]

I have looked at these private tests, but do you have to go somewhere to get the blood taken?I think I will wait until my Dr refers me to endo and see if they will do a full test then, which the Dr seemed to think they would, and just hope it doesn't take too long. I have also emailed my Dr with some choice information about achieving a TSH of 0.2-0.5 and asked if she might reconsider prescribing me more Levo to see if it makes a difference- well, worth a try I thought!

[Jackie]

Hi Nicola, Yes because I wrote lots of letters etc when my GP, NHS, could not longer do it.It was always done for thyroid.How my Hypo, subsequently called Hashimoto found On T3 ,without regular FT3 tests etc it is dangerous, which is why I have to use Blue Horizon, cheapest alternative for me. When I asked the GP if I could pay her as some TUK do.,, near hysterics, "Not allowed"Often complain to, my management, NHS patient not allowed to speak to the Lab Then I can only tell them off, they will not comment.Has to be my GP who does not want to upset them! sooner I died! My biggest problem, is a have acute renal failure and cardiac arrests, mainly if my U`s and E`s, especially Potassium go too high. I have to take a lot of Potassium, meant to have daily tests( say 4 of my consultants), have them weekly as daily not convenient! Unless I am in hospital. My U`s and E` ,especially Potassium change in hours. They never let me know, via GP,as they should . if in renal failure etc, Only way of knowing, an arrest obvious!,I always make sure this and the other relevant details are on the blood form. GP say" Oh they do not look at that," well if I do not get the results for 2 days, ( not convenient for practice early,) it is a bit late then to find very high and I have continue on massive amounts of Potassium etc.It is all lack of care by Labs, like to think they are docs., not long ago they just needed 4 "O"levels!.Sorry, it just makes me so cross!A Haematologist is not even involved in this sort of thing.You have wound me up! I hate stupidity and inefficiency especially when i am fighting to stay alive ,against the odds.

I hope you do, better. My endo writes to say I must have FT3, she cannot believe what they are like!Unique!Tried the PCT also at my practice, the hint of complaint you are booted out, even when their fault. So see how you get on., I hope better than me. Let me know,

Best wishes,

Jackie

[cal1971]

The DR did show me the thing on her computer that won't allow a T3 or T4 test....but she did assure me that when she refers me to an endo that they will be able to do the T3 test, so heres hoping.....

I will keep in mind the private tests and have decided that I will go private if I don't get anywhere with this route. Like i said, I have been on Levo for 12 yrs but last few years have felt like s$%t, and wouldn't have even questioned my thyroid levels until my acupuncturist mentioned it! Now I have read all about it, it makes sense ( severe fatigue, head fog, aching muscles, poor skin, generally unwell).

My Dr did also say 'It looks like you might be on TOO MUCH levo', so she obviously adheres to the theory that you should be mid range TSH......which is telling.

I did read a paper that siad you should aim for 0.3 - 0.5 TSH but I was a bit flsutereed and forgot to show it to her...oh well, onwards and upwards!

[Jackie in reply to cal1971]

Yes, you are wise to have an referral to an endo. Thyroid much more complicated than GP` realise, just because it is common.. Choose one with great care yourself and then ask the GP to refer you. If you see someone privately, if asked, they will write to the GP to do all the tests they want ,also treatment, scans, drugs etc. However, if not insured the GP will be told what tests to do. To have them at a private hospital, are the same Lab as for Blue Horizon ( called TDL) who are so good. Drawback , private hospital over £200, identical tests, TSH, T4 and Free T3 ,I pay £61 at Blue horizon with code tUK 10, more discount if more expensive tests. If your private endo asks the GP to do them , you are still stuck with a NHS who will not do that. That is my situation at the moment. So I use Blue Horizon. NHS endo, not so much time, should be as good ,if careful choice, but they will, if good, do all the blood tests they think your need at their hospital. Then you will almost certainly have TSH, T4 and Free T3 and other tests done.

Not an easy choice is it?

I hope that helps you decide what is best for you. Incidentally if just paying to see a private endo, not expensive, laid down charges, GMC and not allowed to charge more it is the bloods that cost..

Bes wishes,

Jackie