Newbie - looking for support/guidance/feedback

[Kimlisa48]

Hi there

I have always suspected I am hypothyroid, my mother is and has been for 40 years or so and my symptoms all fit to this diagnosis, but, my levels have never been low enough to treat on the nhs despite tests showing my levels are not optimal and being symptomatic.

Basically I got so fed up with not getting any help from my GP i started to self medicate and saw a huge improvement in my symptoms and also a 30 weight loss over the course of a year. I didn't take this decision lightly and only did so after a number of thyroid blood tests, many visits to my GP to ask for a referal to an endo but without any luck. I haven't disclosed my self medication to my GP as he has never thought I had a problem to start with despite test results indicating otherwise.

.

A quick summary of results from previous years:

September 2012:

TSH 2.16 (range 0.34-5.6)

Ferritin 77 (range 11-307)

FT4 9.3 (range 7.5 - 21.1)

August 2012 (privately commissioned tests)

Total thyroxine T4 104 - range 58 - 154

TSH 1.80 - range 0.4.- 4.0

FT4 12.3 - range 10 - 22

Free T3 6.78 marked as high - range 2.8 - 6.5 (never previously tested)

FT4 : FT3 ratio 1.8 marked as low - range 2.0 - 4.5 (never previously tested)

August 2011 (NHS)

TSH 1.79 (range 0.34 - 5.6)

FT4 10.3 ( range 7.5 - 21.1)

However, I decided to stop taking the thyroxine I obtained in November 2013 and at the same time I was under the care of a gastroenterologist for chronic constipation (I think linked to my thyroid) She tested my bloods including my thyroid and it is only today that I have found out the result from my GP (prior to this I was just informed by letter my thyroid in particular was fine and of no cause for concern but without the numbers from the tests) and they are as follows:

Nov 2013

TSH 0.33 (range 0.34 - 5.6)

FT4 14.2 (range 7.5.- 21.1)

As you can see my FT4 has improved greatly but the TSH is now very low.

Since stopping the thyroxine my symptoms are returning as before, the aches and pains, tinnitus, tiredness, depression and anxiety, ittchy skin especially my legs, hair and eyebrows falling out after recovering whilst on the meds. As I have been off the thyroxine since the time of the blood test, I feel this is proof the thyroxine did help me but I am not sure what is happening with the TSH and would appreciate some guidance.

My GP is sending me for another test this week, and I have admitted as much as taking some natural supplements to boost my thyroid function which would explain the increase in the FT4 but I am concerned now about the fluctuating TSH.

I know I will be condemned for self medicating but I was getting desperate for help and with no where to turn. I felt so much better whilst on the meds, my weight loss was the most noticeable thing, but now its 12 pound up since I stopped taking the meds but with no change to diet or exercise routine.

Any feedback on the result of my latest test would be greatly appreciated and thank you not judging me...desperate people do desperate things

[puncturedbicycle]

Welcome! No judgement here. Lots of people are forced to self-medicate.

It would be good if you could indicate when in this timeline you started taking levo.

[Kimlisa48]

Hi there, thank you....in September 2012 just after the September results...I wanted to have a set of results to use a benchmark without medication

[HarryE]

I won't be judging you! I've just started the same thing. Good luck xx

[Kimlisa48]

Desperation does funny things to people eh ? I saw a different GP today who is sending me for a test so I am hopeful she may be more sympathetic. Have posted on another board and responses are suggesting I ask for an ultrasound of my thyroid. It does feel lumpy and I can feel it in my throat when I swallow...

[crimple]

Bit foggy this morning(my brain) but if your TSH results were up and down whilst taking levo it is possible that you have antibodies. This happened to me last year and I have high antibodies confirmed and atrophied thyroid. I am waiting for some test results (to use as a baseline) and then going to try paleo diet, no gluten or dairy) in hopes of reducing antibodies and therefore reduce my symptoms.

[kiltis]

IMO, you were doing the right thing. Now I hope you get diagnosed so that you don't have to pay for your meds Good luck!

x

[Kimlisa48]

Morning all...ive had an antibodie test when I commisioned the private test via Genova Diagnostics and antibodies were less than 20 and not a cause for concern. My mum however does have antibodies thyroid disorder and has done for 40 plus years.

My Ft4 has improved from 9.3 to 14.2 and tsh from 2.26 to 0.33 whilst on the levo... the tests before were without medication....this weeks test also will be taken without me taking any levo for 4 months so if my levels have dropped dramatically I will know its the meds making the difference but more importantly its the effect on my symptoms : no meds feel crap, weight gain, etc etc...take meds, massive improvement in every health aspect of my life.

[Hidden]

We certainly won't condemn you for self-medicating: rather the reverse. Way to take control! And don't let the doctor tick you off either. S/he is supposed to make you well. This s/he has signally failed to do. You have been ill - are still. And who has helped you get better? You yourself. Good for you!

[Kimlisa48]

Hi Humphrey, that was kinda my thinking....fed up with medics that, in my opinion, mis diagnose and mis treat...I had a huge fibroid growing that I complained about for 4 - 5 years, fobbed off with so many excuses...by the time it was scanned I ended up having an emergency hysterectomy. When you know something is wrong with your body you know, which is why I have taken things into my own hands now.

The thyroid range used to determine who gets treatment and who doesn't in the UK is just a joke..the number's seem to override any symptomatic evidence despite in my case there being a strong hereditary influence and more hypothyroid symptoms you can shake a stick at. I wonder if I had been treated for this years ago, I might not have been such a burden on the NHS with the other conditions I am absolutely convinced are symptoms of thyroid disease and not stand alone conditions themselves.

[Kimlisa48]

Hi and thanks for the advice, I will certainly take this on board. My T3 level was over range when I had the private test, which indicated hyperthyroid yet my symptoms are most definitely hypo and also indicated by my low FT4 at the time...a bit of a contradiction and not one I fully understand. Unfortunately I wont be able to get the T3 tested again due to cost and no hope on the NHS as they don't routinely test for it, even though I showed the test to my GP and he could see it was high.

Any advice on where to obtain natural thyroid ? I struggled to find a reputable supplier for the synthetic stuff so any help would be hugely appreciated. Thanks again.