Recent blood result

[Karenlb64]

Hello everyone. Looking for a bit of advice regarding my blood result. The latter part of last year I was feeling increasingly ill with every symptom under the sun, the main one being extreme anxiety and low mood, spent most of my time crying. After going through the usual rigmarole of trying to get the doctors to agree to a blood test I was granted one at the beginning of December which came back with my TSH being 8. Sorry I can’t give you any other results as they literally only tested my TSH. They increased my dose of levothyroxine from 50mcg to 75mcg and told me to have a repeat blood test in two months which I have just done. Just telephoned for my result which I’ve been told is normal at 3.6. Again they have only tested my TSH, nothing else. I have asked when I should next be retested and been told in a years time. Can you all give me your thoughts on both the result and the length of time I’ve been told to leave it before having a retest. I had felt 75% better after they increased my dose, it took about six weeks before I felt any improvement but in the last couple of weeks I’ve been suffering again with the anxiety. I’m finding all this particularly confusing as I’m also going through the menopause, now classed as post menopausal whatever that means and so every time you go to the doctors they put all your problems down to that. I’ve just booked an appointment for next month so thought I’d get your thoughts first so that I’m armed when I go. Thanks in advance. X

[SeasideSusie Remembering]

Hi Karen

It might help you, and refresh your memory, to go back over some of your old posts which can be found here:

healthunlocked.com/user/kar...

You may remember that the aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it is needed for FT4 and FT3 to be in the upper part of their respective reference ranges. So you can see that your current TSH level of 3.6 is way too high. You should have another increase in your Levo, 25mcg now, retest in 6-8 weeks, to bring your TSH down to a level where you feel well.

In support of your request, use the following information:

NHS Leeds Teaching Hospitals say: pathology.leedsth.nhs.uk/pa... Scroll down to the box

Thyroxine Replacement Therapy in Primary Hypothyroidism

TSH Level .................. This Indicates

0.2 - 2.0 miu/L .......... Sufficient Replacement

> 2.0 miu/L ............ Likely under Replacement

If your GP doesn't like this information, remind him that it comes from an NHS hospital.

There is also:

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the magazine for doctors):

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).*"

*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3.

You can obtain a copy of the article by emailing Dionne at

[e-mail]

print it and highlight question 6 to show your doctor.

Once you are on a dose which relieves your symptoms and you are stable, then retesting should be done annually but if you have your dose changed at any time then retesting should be done 6-8 weeks after any dose change.

Don't forget that optimal nutrient levels are important, so we also need to check out vitamins as mentioned in other posts. I do mine annually.

We also advise when doing thyroid tests:

* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.

* Fast overnight - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Eating may lower TSH, caffeine containing drinks affect TSH.

* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.

* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).

These are patient to patient tips which we don't discuss with doctors or phlebotomists.

[Karenlb64 in reply to SeasideSusie]

Thanks for your info. I’ve emailed and got the article by Doctor Toft so will print off and take with me to my next doctors appointment along with all the other advice and info you’ve given me. I’ve booked an appointment with the gp but can’t get in till 25th of this month. In the meantime I’ve decided to increase my dose myself by a further 25mcg to a total of 100mcg as I feel so rotten. Can you foresee any problems with this. I’m nervous about self medicating as I’m not so experienced with all this as you obviously are but last time they increased my dose it took a good six weeks before I felt any improvement and I can’t stand the thought of having to feel like this for that long again. Thanks

[SeasideSusie Remembering in reply to Karenlb64]

It can take 6 weeks to feel the effects of a dose increase, but you may feel an improvement sooner, it's very individual. I can't say whether your GP will have a problem with it, but all you can do is say how ill you felt on your current dose and couldn't carry on like that so decided to increase it yourself. You have the evidence to back up the fact that you were undermedicated with a TSH of 3.6 and if your GP is happy to leave you suffering when there is evidence that your TSH is too high then he is a sadist and you should find yourself another doctor who actually cares about his patients.

If possible, take someone with you to your next appointment, preferably a partner or someone who lives with you so knows how you are from day to day. For some reason doctors act very differently when there is a witness in the room, and if it's a male partner who can advocate for you then that's even better.

Remember that a doctor-patient relationship is a partnership, you are partners in your health. You have a chronic illness that is with you for life and your doctor's job is to help you be as well as possible, the aim is for you to thrive, not just survive.

[Karenlb64 in reply to SeasideSusie]

I’ve since realised that my TSH is 3.7 after ringing the doctors again the other day. I don’t know if the doctor will have a problem with me increasing my own dose and to be honest I’m past caring what he thinks was just concerned that I may be doing the wrong thing for myself. My husband is coming with me and is going to tell them just how awful I’ve been feeling. At least he can talk when I can’t. I feel so awful that I just end up crying and can’t get control enough to fight my corner. Thanks for your support, it means a lot.

[SeasideSusie Remembering in reply to Karenlb64]

If you cry, and I know it's easy to reach that point, and you are offered antidepressants, refuse. Being undermedicated gets you down, and depression is listed as a symptom of hypothyroidism, so don't allow your GP to label you with depression or any kind of mental health problem (which many are prone to do), it's not depression.

[Karenlb64 in reply to SeasideSusie]

They already tried that one on me before Christmas along with CBT. Fortunately I didn’t go down that route and a few weeks later I eventually got them to do a blood test which came back with my TSH at 8.

[shaws Administrator]

Phone them back and state that you've been told your TSH is 3.6. and tell them that as you have already been diagnosed as hypothyroidism, the aim is a TSH of 1 or lower - not somewhere within the range.

TSH is not a thyroid hormone and they should also test your Free T4 and Free T3. (I don't think they will) but if both are low you wont feel good at all. (you can get the Frees from one of TUK's private labs if GP wont do them). Or pop a copy of both the following with your symptoms ticked off plus interpretation of tests and send to GP. .

When you are on an optimum dose, you should have no clinical symptoms.

thyroiduk.org.uk/tuk/about_the_thyroid/hypothyroidism_signs_symptoms.html

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

[Koola]

Hi Karen, I'm not knowledgeable like many here who will surely answer you but I have been and still am suffering from all symptoms, plus anxiety, crying etc. What I do know is that you have to have FT3 and FT4 tested -- at least. (Thyroid antibodies & reverse T3 possibly too) Then there’s ferritin, Vitamin B and D and folate. Don’t wait because your dose now might not be right and you won’t feel any better. Post the results here and then go see your endo again. I feel blessed that I hit on this post. All best!