Help, feeling so despondent.

[MiniMum97]

I have multiple hypothyroid symptoms, the worst being exhaustion and brain fog. I am getting to the point where I am really starting to struggle.

I have been tested over the last seven or so months the first test done by my GP showing my T4 just under range and my TSH high in range. This was what first alerted me to thyroid maybe being the issue. Got retested but because T4 crept back up into range and my TSH went a little higher but was still in range, GP thought this was all fine and dandy. I therefore decided to monitor this myself and got two private BH tests which showed my T4 bobbing about being 11 and 12 and my TSH steadily rising. The last BH test finally showed my TSH over range.

So....wrote to my GP, not feeling particularly hopeful to be honest but she was amazing at the appointment, listened, was really thorough but wanted to repeat the tests, both my husband and I left with the impression that she thought it was probably thyroid too and was ready to prescribe as long as tests supported it still.

Test results came in and they were my "best" results yet! Never been so disappointed to get a "good" blood test result. TSH came in at lowest its ever been at 3.16 (0.27-4.2) and T4 and T3 highest they've ever been (T4 was 13.8 (12-22)). I just couldn't understand it and feel so depressed - I thought I had made a big step forward to getting better. I just don't understand how they could change like that? Is it possible that my thyroid has suddenly started to improve? I have typed a summary of my test results below so you can see the pattern.

Are BH tests reliable? Has anyone else had BH tests and GP tests at the same time and they've been very different? My GP also tested my B12 and this was 1,222 ng/L [197 - 771], when 3 weeks before it was around 687 (140-725)??

Later that evening, I realised that hadn't stopped my biotin supplement like I usually do a few days (or any of my supplements) before as I wasn't expecting her to retest me that day. I am so exhausted and brain foggy (especially the day I saw her) that I didn't think about it. I have read up the info on biotin and says it only affects the tests if your biotin level is more than 3 times the upper limit of the reference range. Could it be that high if I am only taking 40mcg a day? (NB I had fasted for the GP test just by luck, and it was first thing in the morning). Could the biotin and/or fact I had taken B12 the morning of the test explain why my thyroid and B12 results were so different from 3 weeks before?

Has anybody had experience of that amount of biotin (40mcg a day) affecting their blood test result?

I am thinking of writing to my GP about the biotin and asking for a retest but don't want to look like a complete idiot.

Do I just scrap GP route and go private now? My GP is really trying to help. She said when I spoke to her following the test results above that she wanted to refer me to an endo but really had no basis on which to do that. I have a neurologist appt at end of May that she wants me to wait for and then come back and see her. I think if there is no improvement in symptoms she will then refer me to a endo. I don't know how long that will all take but at the moment I am not sure I can wait even until the end of May, although I know it's better ideally if GP is on side with diagnosis. Maybe I will feel like I can struggle on when my disappointment as lifted but at the moment I feel like I've lost all hope.

Thanks everyone.

TSH/T4 results:

27/07/16GPTSH: 3.19 (0.3-4.2) T4: 11.0 (12-22)

22/09/16GP TSH: 3.38 (0.27-4.2) T4: 12.0 (12-22)

21/11/16BH TSH: 4.15 (0.27-4.2) T4: 11.91 (12-22)

29/03/17BH TSH: 4.32 (0.27-4.2) T4: 11.67 (12-22)

20/04/17GP TSH: 3.16 (0.27-4.2) T4: 13.8 (12-22)

B12 results:

22/06/16 GP 428 (197-771)

21/11/16 BH 371 (140-725)

Started supplementing 1000mcg B12 plus B complex early Dec after active B12 test came back high in range.

29/03/17 BH 687 (140-725)

20/04/17 GP 1222 (197-771)

[SeasideSusie Remembering]

MiniMum97 Have you had antibodies checked? If not, do a Blue Horizon Thyroid plus Six which include both types of antibodies (NHS only normally does one, and then not very often).

[MiniMum97 in reply to SeasideSusie]

Hi Yes these have been checked three times and are fine. All my BH tests have been thyroid plus eleven. Thanks

[SeasideSusie Remembering in reply to MiniMum97]

Oh right, well that's my theory out the window. I was thinking Hashi's maybe.

[Silver_Fairy]

Have you had your Vitamin D and Ferritin tested?

[MiniMum97 in reply to Silver_Fairy]

Yes, ferritin, B12, Vit D and folate all tested. On vit D3 and K2 - vit D almost 100 when last tested. My ferritin was very low (8 I think), but have been on iron supplements (4xgentle iron with 1000mg vit C) for almost a year. It had gone up to about 55ish, then dropped when I dropped the dose to half to 30ish again. Upped my dose back to 80mg and it was at 45 when GP tested last week.

[greygoose]

You do know that TSH level drops throughout the day, don't you? And after eating? It's highest early in the morning. If your GP did the blood draw at your appointment, it sounds as if it was done later in the day than is ideal.

[MiniMum97 in reply to greygoose]

Yes as I said in my post, GP blood test was taken first thing (appt was at 8.40am) and I had fasted.

[greygoose in reply to MiniMum97]

Ah, ok, sorry. Got confused with all the different results!

[Hidden]

What your GP isn't interpreting is that your T4 has risen due to increased TSH, which has then fallen in response to the achieved rise in T4. You could ask for a trial of medication on this basis.

[MiniMum97 in reply to Hidden]

Sorry I don't understand, surely that would be what would happen if someone had a healthy thyroid?

[Hidden]

If your thyroid was healthy you'd have a much higher T4, a much lower TSH (even at zero) and no symptoms.

[MiniMum97 in reply to Hidden]

What I am trying to understand are the anomalous looking results - my GP told me that TSH should not change so quickly in such a short time.

[Hidden]

I think your GP should schedule a repeat blood test for you, say end of May because that will be a further 4 week period since your last one. On your behalf I'd like to see her have the confidence to start medicating you and I'd specifically request this.

[Dhalia50]

Hi

I just posted this and thought might help you as my levels seemed to be about the same as yours when I was first treated, the GP did say I was borderline and I also decided to go privately this year to see an endocrinologist. Here is some of my post:

"I developed severe exhaustion, pain, unable to barely walk and brain fog in Jan 2016 resulting in 6 months off work. In April due to being referred to ME/Chronic Fatigue Syndrome service at request of Occupational health my thyroid function was tested. My results were T4 @12 and TSH @5. The GP said I was borderline but due to my symptoms started me on 50mcg Levothyorxine. Within 2 weeks I felt a significant improvement though this did not last and nowhere near my normal self. I went back to work in August, not because I felt well enough to but as I found out I could be dismissed if I did not return! Anyhow that's another story....I have continued to suffer exhaustion, pain and flu like symptoms if I increase physical activity, subsequently I was diagnosed with ME/CFS last year, though this just means they cant find anything else wrong with me it has meant that I have had support from ME/CFS NHS service, which has been very good. My symptoms worsened again this winter. I have repeatedly asked GP if Thyroid still a problem and he repeatedly told me no my results normal, T4 19, TSH 1.4. Last time I saw GP he said he would re-check my bloods and may refer to endocrinologist. I decided to go privately at a cost of £200 for 45 minute consultation. He told me that the T4 was not really important only TSH result important and should be 0.1 - 1 ideally. I asked him about T3 and he said there was no point testing it as they could no longer prescribe T3 as it had been banned....

Anyhow had my thyroid re-tested a week ago and TSH 1.84 and T4 15, seemed to me my Thyroid function decreasing. The GP, last Thursday, told me results were normal but when I said endo said TSH should be 0.1 - 1, he said I could try extra 25mcg thyroxine and retest in 8 weeks. The Endo also wrote a letter advising this."

All the best!

[MiniMum97 in reply to Dhalia50]

Thank you for your reply. Did you go to an endo off the Thyroid UK list?

[Dhalia50 in reply to MiniMum97]

No the list they have just has GP's not endocrinologists I believe. You have to have a referral letter from your GP so you could ask to be referred to an endo on the NHS as you are entitled to a second opinion. From the replies I have had it just gets more and more confusing!! Think the GP could at least trial you, maybe if you ask if you could just do a trial for 2 months or go to see an endocrinologist? Sometimes if you ask specifically they are more responsive. Good luck.

[KathyN in reply to Dhalia50]

Hi, the thyroid uk list definitely has endo's on it. I have just seen a brilliant one who couldn't have been nicer or more helpful.

[MiniMum97 in reply to KathyN]

Were they in the south east? If so, please could you pm with the details of who you went to see thank you!

[KathyN in reply to MiniMum97]

Hi minimum, sorry can you tell me how to private message you please, can't work it out! Yes he is in the southeast.

[MiniMum97 in reply to KathyN]

Hello You need to click on my name to get to my profile page and then click the button that says "message". Thanks so much!

[jgelliss]

MiniMum97 , My sympathy to you . It's horrible to not feel well . Do you dose with NDT or T3 ? If yes do you split your dose ? How much after you dose do you run labs ? It might be that your running labs close to dosing with anything with T3 in it and your testing your peaks instead of troughs (low point) . Also when running labs make sure your taking your T4 hours before testing .

[MiniMum97 in reply to jgelliss]

I am undiagnosed as yet and don't take any thyroid meds.

[MiniMum97]

No one seems to know what could cause the anomalous results from the replies so far. I have written to my GP again asking for a retest of T4 and TSH enclosing some info about the effect of biotin. Will see what she says later this week. Thanks all.