Before I do my last test before GP treats me. A... - Thyroid UK

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Before I do my last test before GP treats me. Adrenal Q

14 Replies

Ok, sorry to be a pain posting again about my situation. You all know I had bloods done in August last year

TSH 5.35 (0.35-5.5)

FT4 11 (7-17)

I went private with Blue Horizon in January and ...

TSH 6.54 (0.27-4.2)

FT4 14.8 (12-22)

I then had a re test done 7 weeks later in March, which I will post on here. 

I am suffering from chronic fatigue symptoms. Daily I feel fatigued and I was crashing after over doing things. Simple things like too much yoga, or too much housework. If i get stressed I crash badly. By a crash I mean so weak, fatigued, weak limbs, anxious, tearful, tiredness like I have never felt before. Those crashes were daily but recently had become less frequent until the last 2 weeks when they returned and have been happening every other day, which is so dissapointing.

My fatigue began in May last year. Just a general fatigue and noticed I felt weak for days after exercise. Hence why the GP did bloods in the August. He said the thryoid was fine but my ferritin was 15 and B12 was 212 so I supplemented. Now the B12 is up to 477 and Ferritin at 34.

Then in October last year my son was ill, he was being bullied and told me he was suicidal. My world fell apart and within weeks my symptoms of fatigue worsened to the point when I walked I felt I'd collapse, the floor moved as I walked and I was crashing daily. I was a wreck and couldn't function. My GP diagnosed acute stress due to my young son being so unwell with depression and panic attacks. The stress of seeing him like that and having to help him with no support was tough. I had anxiety 4 years ago after my brother tried to attack me and i cut my family out all the stress triggered and anxiety disorder which was under control and life was great again, away from my family that hurt me and all that stress. That happened in 2012 and after a tough 18 months I felt well again, until this all started last summer.

Now my son is well and things for me felt a little better until the crashes returned recently. I have been trying a vegan diet so I do wonder if that's to blame.  Daily I feel so fatigued, weak, no energy to do anything and if I try I feel so ill for days after. I push myself daily, walk my dogs, do yoga, lots of healthy cooking.... I keep busy and am happy but then I crash badly from doing too much. I have been like this for 6 months and my GP recently said now the TSH has risen to 7.5 he is classing me as subclinical as they don't treat until it reaches 10. He would like 1 more test to be done in the next 2 weeks and he promised then he would treat.

When I posted here with my latest results a month or so ago I had many suggest I didn't have an actual thyroid issue, more an adrenal issue from all the stress i have been under as the stress has led to my anxiety disorder and agoraphobia rearing it's head again which I haven't had in a couple of years.   My FT4 is rising, it was 14.8 on Januarys test and 15.8 in March. The TSH is also rising. It rose from 6.54 to 7.51 in 7 weeks. My GP is a little confused as to why the FT4 is rising which does put him off treatment but as TSH is rising he says he will treat after the next test showing a continued trend of rising, then he has a case to prove he can go against the NICE guidelines. 

Can anyone give me any input? I want to make sure I am doing the right thing taking the thyroxine. I am worried why my FT4 is rising and TSH at the same time. I eat well, take care of myself yet I continue to struggle with this chronic fatigue type illness. It's awful. I am not gaining weight, I am not losing either but I do take Mirtazapine 15mg for anxiety which did make me gain weight and it's hard to lose any on it too. I take the pill Loestrin for heavy periods, which I do want to wean off but right now due to how unwell I feel I am not sure i could cope with the heavy periods making me fatigued more so. My main symptom is this crippling fatigue and the crashes i experience.

I shall attach the latest results.

Thank you all for your continued support.

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14 Replies
shaws profile image
shawsAdministrator

Some sympathetic GPs would treat a patient who has a TSH of nearly 7. It is a disgrace that he has diagnosed your with CFS due to your symptoms but ignored your very high TSH. That you are going to remain untreated due to the whereabouts of a TSH result!

thyroiduk.org.uk/tuk/diagno...

thyroiduk.org.uk/tuk/testin...

When you get a blood test for your thyroid hormones it has to be the earliest possible appointment. Don't eat before it although you can drink water. If you are put on hormones (levothyroxine) you allow approx 24 hours between the last dose and the test so that the results aren't skewed and GP adjusting your dose up/down/ willy/nilly according to the dot on a print-out. 

Take a print-out to the GP of the testing link above. Discuss with him the probability of a trial of thyroid hormones. Also the following one:

thyroiduk.org.uk/tuk/about_...

Also ask for a Vitamin B12, Vit D, iron, ferritin and folate to be done as we are usually deficient.

Tell him you are a member of Healthunlocked Thyroiduk.org.uk who have given you information and that it is an NHS Choices for information about dysfunctions of the thyroid gland.

in reply to shaws

Thank you. 

As I said in my reply I have had the b12 etc tested. I always go fasted first thing. I've been doing the blue horizon tests at home. 

My recent test tsh was 7.54. My gp said I was subclinical hypothyroidism. 

Thanks again.

Ju

shaws profile image
shawsAdministrator

I am glad your son is better, so that's good. Your B12 even though in range, it is recommended that our B12 be around 1,000. If you wish you can take sublingual methylcobalamin B12 (not cyanocobalamin)..

Don't be annoyed with GP as he is only doing what is in the guidelines. We have to read and learn so that we understand our condition better than those who we expect to know.

(I am not medically qualified, only have my own thyroid experience to go by and am well now. - there are over 300 clinical symptoms of hypo)

in reply to shaws

Thank you.

I'm not annoyed I guess he's doing his best now to help me.

Yes I take b12 daily in a lozenge form from Jarrow. 1000ug a day. I'm not sure if I can take more.

Thank you 

Julie

LtAngua52 profile image
LtAngua52 in reply to

I take up to 5x5000 mg of b12 sublingual lozenges daily, pkus the spray sometimes. I have just ordered the solution to inject as it lasts longer and will be cheaper. You cannot overdose on b12 as it is water soluble so any excess is just excreted. Despite what doctors say you can't overdose on it. So if you want to try more to see if that helps then go for it.

in reply to LtAngua52

Thank you 😊

humanbean profile image
humanbean in reply to

If you worry about taking more B12 you might like to read this :

stichtingb12tekort.nl/weten...

I take 5000mcg per day.

in reply to humanbean

Thank you.

in reply to humanbean

Thank you.

Clutter profile image
Clutter

jingyd35,

You would need a serum or saliva cortisol test to confirm an adrenal problem.  TSH 7.51 means you have an underactive thyroid.  It will be the high TSH flogging the thyroid to produce hormone which has caused your FT4 to rise slightly but it's unlikely to be sustained without thyroid replacement.

_______________________________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

in reply to Clutter

Thank you 

Yes I'm considering it but is it likely all of this is just hypothyroidism causing the crashes and making me feel so unwell? I was feeling a little better and now I feel so bad again. I'm not sure why. I seem to be crashing daily again and it scares me alot.

Thanks

Julie

Jazzw profile image
Jazzw

So are you thinking B12 deficiency and folate trap? I don't know enough about it to explain why alarm bells should ring when folate is high and B12 relatively low, only that it has something to do with methylation and that it may mean you're functionally deficient in B12.  The PA Society here on Healthunlocked will probably be able to explain it better.

in reply to Jazzw

My folate isn't usually so high it's just since I was taking too much folic acid. Usually it's about 19 or 20.  It was only high that one test and I then realised I was taking 400mg folic acid in both supplements I take so I was told it'll just be from that. I wasn't concerned.

Hi Sandy.

Thank you for your reply. My good T3 and T4 has indeed been confusing me and my GP. My FT4 has risen from 14.8 to 15.8 recently and the TSH has risen too.

My GP didn't think I could be symptomatic with my good FT3 and FT4 levels. He has been very confused as to why my TSH keeps rising so has just finally agreed to treat it if the next test shows another increase.

My GP did think my symptoms were more in line with CFS/ME with my crashes after exertion or stress. 

My b12 and Ferritin are low. Well the B12 has risen from 212 now i am supplementing, it's currently sitting at 477. My ferritin has risen from 15 to 34. 

Your reply has been very helpful, as I have been so worried and confused as to why I feel so, so tired and having these awful crashes.

Thank you

Ju

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