After a thyroidectomy. Bone pain, lethargy, levels not right? Thyroid experts over here!

[DoItTooJulia]

My mum has medullary thyroid cancer.

She had a total thyroidectomy, parathyroids removed and one reimplanted.

Endos say levels are in range (will dig the actual numbers out later) but mum is not doing so good. Debilitating bone/joint pain, lethargy and feeling shitty.

There is loads to the story, don't want to drip feed, but could do with summoning the experts for help!

We have questions about the calcium supplementation, the best time of day to take lego thyroxine, the advantages of trying natural thyroxine, and how to get the endos to take the symptoms seriously and not read the levels off a screen and say there fine, ignoring the symptoms.

Mum has got a bone scan in a couple of weeks, just in case of spread.

Tia. And happy to answer questions in case the info isn't enough.

A hopeful bump!

So not an expert but bumping for you.

Have you tried Thyroid UK? I have an underactive thyroid and I've found a lot on there really helpful. I found it took over a year to get my TSH levels right. Although the 'normal' range for TSH is 0-5, I'm actually half dead at 5 and need to be at 1 to function. I take thyroxine at bedtime which helps me get up in the morning.

Also look into vitamin D deficiency - it goes with thyroid issues and can cause joint aches and pain. And possibly test for coeliacs disease, my thyroid is definitely better if I avoid wheat.

Put a shout out for RockinD who is good on thyroid stuff .

Ha! Stupid typo!

Thanks for replying. The vitamin d is interesting, because of the low calcium. Mum's prescribed calcium supplement is combined with vit d to aid absorption. My mum is also taking some stronger vit d supplements because she has wondered about vitamin d.

Trouble is the endos only seem interested in what the levels say and not how mum feels. It may not even be to do with levels, but seriously, no one is interested, despite us being quite articulate and switched on during appointments! Aaarrrgggh.

My GP told me that the NHS was considering making the TSH acceptable range higher, up to 10. For comparison, in America top of the acceptable range 3. I need my TSH to be below 1 to feel well. So, I don't trust NHS tests, especially the TSH one.

If you have your DMs results, share them with the Thyroid UK community healthunlocked.com/thyroiduk and see if they can help.

I will check the results over and look at iron again, thanks.

Levo half an hour before food. Yes my Nuclear med consultant is talking about raising my TSH too 5 years post thyroidectomy/ RAI treatment. TBH I feel good keeping my TSH supressed so I'm not keen on this happening in October when I have a review. The trouble with natural thyroid is that your Consultant won't sanction it if the treatment is for cancer.

RockinD, now there’s a name from the past!

I don’t know much about thyroid cancer, but I do know that people without a thyroid, for whatever reason, often seem to struggle to convert T4 to the active hormone T3 and need some T3 as a boost and I also know that telling someone they must be OK because the figures look good, is not helpful. It would be interesting to see the figures, with the reference ranges.

There’s obviously quite a lot going on with OP’s Mum, with the parathyroids as well, so calcium levels need to be monitored and corrected if necessary. Calcium supplements need to be taken four hours away from levothyroxine.

Also, the usual suspects need to be optimal, vitamin B12, folate, vitamin D and ferritin.

Levothyroxine is usually prescribed to be taken in the morning, in which case it should be taken with water only at least half an hour, and preferably an hour before eating or drinking anything else. Alternatively, a lot of people take theirs before bed, at least two hours after food, with no ill effects.

Natural dessicated thyroid is the elephant in the room. The NHS can prescribe on a named patient basis, but mostly they don’t. I know at least one person who has had ThyCa who takes it and is doing very well, but the NHS will want to keep OP’s Mum on medication they understand.

In some ways the cancer is masking the issue that mum has no thyroid, and that the TT means that her thyroid issues need looking at independently of the cancer (that's aimed at the medics, not pp btw!)

B12 is ok. Well it was when mum was supplementing with a high dose sublingual version (pre dx mum felt shit and no one could get to the bottom of what was wrong, so we tried various home remedies as it were.) and if I remember correctly iron and ferritin were ok. I am going to get the latest results out and post them.

Thanks for the messages, helps to chat about it all!

I second (third) the recommendation to post in health unlocked - you are more likely to find people who have had the same procedure who can help more fully.

It is a common complaint that thyroid patients are not listened too as endos tend to focus on the blood results only. I would recommend getting a print out of all your mum's blood results and going through them with a fine tooth comb and seeing what can be done to move into the optimal range.

I suffered from bone and joint pain ( I am hypothroid) and have found that supplementing vitamin d helped with this - in addition to persuading my endo to add some t3 to my medication.

I don't want to sound pessimistic but you must prepare yourselves to take charge of your health and to have to be extremely persuasive to move forward with your mum's treatment.

Just FYI I take levo (t4) and liothyronine (t3) and supplement iron/ b complex, zinc, sublingual b12 and D, magnesium, and take a probiotic. I still have hypo symptoms but each one of these things has helped to an extent. If I had not investigated my condition myself I would still be rotting away on levothyroxine