Still fiddling after TT ........

[Betty41]

Hi all,

I'm currently taking Levothyroxine after TT in September 2016. I would appreciate advice as I have an appointment with my GP next week. I posted my results previously when taking 200mcg which suggested I was overmedicated. GP dropped my dosage to 175mcg.

Since then my fatigue has increased, still suffering very dry eyes with occasional blurred vision, acid reflux, low mood, steady weight gain, very emotional and irritable and just feel everything takes a huge effort. I also feel weirdly detached like I just don't care and want to push everyone away. I know it's easy to blame everything on thyroid (or lack of in my case) but here are my latest blood results:

Serum Free T4 21 pmol/L (10.0 - 22.0)

Serum TSH 3.7 mu/L (0.3 - 5.5)

Serum Vitamin B12 364ng/L (190.0 - 660.0)

Erythrocyte sedimentation rate Above range 39 mm (0.0 - 9.0) Above high reference limit

Plasma Glucose level 5.9 mmol/L (4.0 - 7.7)

Serum vitamin D level 120.4 nmol/L (>50.0) < 30 nmol/L deficient 30 - 50 insufficient >50 sufficient

I've been supplementing Vit D (on GPs advice) as was low on last blood test. Suffered lots of bone pain but this has gotten a lot better recently.

Please can you advise what I should do next? I can't ask to up my medication to 200 as that had me overmedicated previously. I note from other posts that some of you alternate your dosage. Would 200 / 175 alternate days be advisable?

Should I stop taking vitamin D now as results are high? I'm not sure what optimum level should be? I also read somewhere else that if you have previously been deficient it is wise to take a maintenance dose?

Inflammation markers have been high on every blood test I've had recently but GP isn't concerned. Should I be?

All of my results have been flagged as 'No further action required'. At the very least I think I need to ask for a change in Levo again. Do you agree?

I would appreciate any advice so that I can discuss it with my GP next week. Many thanks 😊

[shaws Administrator]

I looked at your previous post and see that your dose was reduced as your FT4 was high.

Re your previous result did you allow a gap of 24 hours between your last dose and the test and take it afterwards. Did you also fast (you can drink water) and was it at the very earliest?

[Betty41 in reply to shaws]

Hi Shaws, I didn't take medication on day of test, had nothing to eat. Blood was taken at 8.30 am

[shaws Administrator in reply to Betty41]

That's good.

If someone has had a thyroidectomy I think the most sympathetic dose would include T3, i.e. T4/T3. I have my gland and had so many more clinical symptoms on levo than before my diagnosis with a TSH of 100.

I am well on T3 only now but researchers have shown that a combination of T4/T3 helps many. The only problem now is that they've withdrawn T3 which I think is a criminal act and they should be prosecuted for leaving many high and dry and desperate without their addition of T3 to T4 or T3 only.

Many on the forum have sourced their own.

You need to increase your B12 and use methylcobalamin sublingual B12. I buy mine from Amazon as they have a selection. Not many pharmacists stock methylcobalamin but cyanocobalamin which isn't preferred by us.

As bloods aren't my forte others more knowledgeable will respond.

[SilverAvocado]

Hi Betty41, I've just had a look through your last few posts since your thyroidectomy. I'm in a similar position, my TT was in April 2013.

Looking at your results, your freeT4 is really as high as you want it to be, but your freeT3 has a lot of room to increase. The freeT3 is the most important number, and ideally you want it to be in the top third of the range. Yours is a bit over halfway.

So the ideal next step is to try adding some T3. People who have had a TT are particularly likely to need T3. But unfortunately doctors are very unwilling to prescribe it at the moment. It's possible to think about self medication (that's what I now do) or requesting a referral to an Endo if your GP is unwilling to prescribe it. It's a long journey to try all the possible permutations of medication, and the next step is to tackle your doctor and see if they will support you on that journey.

On the Vit D question, yes definitely stay on a maintenance dose, especially as we're heading into Winter so you'll be getting even less from the sun.

My inflammation markers are also high, and most GPs don't carer but some are a bit concerned. I have chalked it up to being undermedicated and hope it will just go away once my medication is sorted.

In terms of stress that you were asking about previously, the intolerance won't go away, so it is just about avoiding those situations. I'm really glad you've been able to quit your job, as I'm a massive advocate for giving up work as far as possible. I believe rest is a huge benefit. I find that if I get lots of rest, the amount I can do the rest of the time is much larger.

I notice many people try to live the same life they had before, but just get more and more chaotic and stressed. I definitely recognize the thing you mention about not even caring about people or life. But I now only get like that if big events I can't avoid come up. I suggest just blocking out big sections of the day to rest. Lie on the sofa or in bed. Do things like watch films or read if you can do those and still get very relaxed. Also things like Mindfulness are really useful, as it's learning to get good quality rest.

Also just look at your weeks on the calendar and think about how many activities there are, and work out how many you're able to do without starting to lose track of yourself, and fill in days or half days with nothing to do so you can just lie down, or at least a nap every afternoon and things like that, whatever works for you.

[SilverAvocado in reply to SilverAvocado]

It can be really difficult I think, to accept that you have a serious illness/disability and will have to adjust your whole life to accommodate it. Hopefully you'll eventually get your energy back, but it may be a long road, for me it has been.

But at the same time I've got several friends who are a lot less impaired than me in what they can do, but a lot more strung out and suffering for it, because they want to just soldier on and live as they did before.

[LAHs]

A TSH of 3.7 will pretty much guarantee hypothyroidism, I have had a Total Thyroidectomy (TT) and I am guaranteed hypo at 1.0 iu/ml. It will take a very long time to get to the perfect dose after a TT, it took me two years. Basically if 200mcg is too high and 175 is too low you have to go to the center of those doses, 188mcg. You will not find a pill for 188 and you will have to get a pencil and paper and work out what combinations of standard pills make 188. You can take a pill of one dose one day and another dose on alternate days, this is because Levo has a half life of 7 days, you are maintaining a level not going up or down each day. Some people are very sensitive to dose, I am one of them, I fiddled for two years between 125 and 150, my ideal dose was 137.5 mcg! Fortunately I had a wonderfully patient (Italian) doctor who worked with me and did all of the many blood tests which are necessary to get the dose right - including (and most importantly) how do you feel on the current dose.

BTW, normally one only takes T3 for a few months after a TT. You might bring this up to your doc. I felt great on T3 only just after the TT and did not understand why I had to go on Levo afterwards - but we did eventually work it all out.

Oh and btw, if you are still hypo on 188 you go to a dose between 188 and 200 and vice a versa and so on and so forth! Be persistent, I drove my doc crazy but he became interested after a while.