A bit lost : Hi All, I am currently in a position... - Thyroid UK

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A bit lost

TimD250172 profile image
7 Replies

Hi All, I am currently in a position which I didn’t chose to be and I would really like to better myself.

The problem I have is most of the negative things that have caused this outcome have been a result of my diagnosis 4 1/2 years ago.

When I talk to any GP they look at my results and say I’m fine, the other issues must be anxiety which isn’t related.

I’m sure I’m not converting the Levothyroxine correctly as I have constant aches and fatigue and to top it off low libido :(

The situation I’m in is causing more stress and anxiety which seems to be dragging me downhill.

Any suggestions on a way forward would be appreciated, I doubt it’ll resolve my current situation but I just want to move forward with this.

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TimD250172
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SeasideSusie profile image
SeasideSusieRemembering

TimD250172

I’m sure I’m not converting the Levothyroxine correctly

When you posted your results 2 years ago greygoose did confirm that your conversion was poor and suggested that you reduce your Levo slightly and add in some T3.

3 years ago you suggested this yourself and considered asking a family member who was going to Turkey to get some.

Did you not do this?

TimD250172 profile image
TimD250172 in reply toSeasideSusie

Hi,

You’ve been helpful during my time on here but unfortunately not, I no longer had the opportunity and gave in to be honest. I have no idea how to get T3 but welcome suggestions.

SeasideSusie profile image
SeasideSusieRemembering in reply toTimD250172

TimD250172

You need to put up a new post asking for recommendations of suppliers of T3 by private message. Your post will have replies turned off as we can't name suppliers on the forum, it will remain visible and hopefully you will get some responses.

Feel free to check with me, or another of the Admin team, to see if we have any feedback on the recommendations you have been sent. There are some know unscrupulous suppliers who are happy to take orders and payment but not deliver.

Members may be more willing to share their supplier information if you post current thyroid/vitamin results and you will also get guidance on how to introduce T3 and whether or not you need to reduce your level of Levo. Vitamins need to be optimal before adding T3 so if you have any low levels we can suggest how to address them.

When booking thyroid tests we advise:

* 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.

hashiman profile image
hashiman

Hi Tim , have you had your testosterone levels checked ? 3 years ago felt much the same as you describe ,and treating my thyroid alone did not help (currently on 175mcg) I have been on testosterone replacement for the last 3 years approx and it is this has has made be feel better much more noticeably than the thyroid treatment. It’s not just the obvious either I had lost vocabulary had so many aches and pains and literally felt like I was wading through treacle . I was treated with Nebido injections every 12 weeks but this seemed to wear off after around 8 weeks so for the final 4 weeks I was back to feeling terrible ... now I’m treated with testogel and whilst the highs aren’t as high the lows aren’t as low very much middle of the road , but that’s fine . I’m not saying I feel fine all the time I still have “flare ups” and with being treated for thyroid and Low T it can be hard a first to know what’s flaring up, but after 3 years I would be 85% sure it’s my testosterone rather than thyroid . I’m not sure what thyroid condition you have , I have hashimoto’s and this can cause secondary male hypogonadisim (Low T) when sufficiently treated testosterone levels should return ... mine didn’t as I guess I went so long without thyroid diagnosis .

I hope you feel better soon 🤞🏼

TimD250172 profile image
TimD250172 in reply tohashiman

Hi Hashiman,

Thanks for the reply. I have never had my T checked and I too have Hashimoto.

Probably explain why my libido is no. Existent as well.

hashiman profile image
hashiman in reply toTimD250172

I would definitely ask to be tested . Being treated for Low T has made me feel so much better , far more noticeably than just thyroid treatment. If you are tested and found to be low in my experience I would definitely opt for testogel rather than injections. Dr also prescribed Ciallis initially, it’s still on my prescription but not needed so much nowadays.

SlowDragon profile image
SlowDragonAdministrator in reply toTimD250172

Suggest you get FULL Thyroid and vitamins tested and testosterone too

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

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