I’m usually on the pernicious anaemia forum but I’ve been recovering from a diagnostic hemithyroidectomy confirming thyroid cancer. I think I am beginning to enter hypothyroidism in a big way and am waiting for my NHS TSH test results. I know that private free t3/t4 etc. testing is better but with a lot of hospital stuff coming up (and hospital delays for further cancer screening and treatment meaning that I may have to pay for further private scans) it’s a bit too much to fit in and Im really tired with pain etc and am overwhelmed.
I wanted to ask a couple of things?
I’m starting to develop a salt craving which I seem to need in addition to calcium, phosphorus and other electrolytes or else I swell, develop severe headache and feel very agitated and ill. Everything seems to right itself when I take salt and calcium so I wanted to ask if anyone else has experienced kidney issues while being hypothyroid and did starting Levo reverse issues?
And I wanted to ask about good reading material for beginners? It will be an utter surprise if I am not yet officially in a hypothyroid situation from the tsh test because the warm weather is causing me to react oddly which is completely new, and starting to feel slow, swell and well….ummm….feel stupid/mentally sluggish 😳.
Also is levo available in liquid formulations (cancer swallowing issues) and is differences in formulation cause the same problems as the tablets….in other words some tablets work better than others?
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RoseFlowerDew
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There are liquids (levothyroxine oral solutions) but, despite seemingly having almost identical ingredients, members do sometimes find differences. Details in my UK document linked below.
They are also very expensive - which leads to a huge degree of reluctance to prescribe them. Even in cases like your where they would appear to be amply justified.
Before liquids became available, many levothyroxine tablets said in their Patient Information Leaflets that you could disperse the tablets in water and swallow that - being careful to make sure none remained in the vessel. You might find that useful to get you by until you manage to get a liquid product.
A feeling that more salt is needed is reasonably often mentioned. And thyroid issues can certainly affect kidney function. Adequate thyroid hormone levels seem to help.
Wishing you the best through this.
helvella's medicines documents (UK and Rest of the World) can be found here:
helvella - Thyroid Hormone Medicines
helvella has created, and tries to maintain, documents containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world. There is now a specific world desiccated thyroid document.
I highly recommend viewing on a computer screen, or a decent sized tablet, rather than a phone. Even I find it less than satisfactory trying to view them on my phone.
helvella - Thyroid Hormone Medicines - UK
The UK document contains up-to-date versions of the Summary Matrixes for levothyroxine tablets, oral solutions and also liothyronine available in the UK. Includes injectables and descriptions of tablet markings which allow identification. Latest updates include all declared ingredients for all UK products and links to Patient Information Leaflets, Dictionary of Medicines and Devices (dm+d), etc. PLUS how to write prescriptions in Appendix F.
Contains details of all known desiccated thyroid products including information about several products not considered to be Natural Desiccated Thyroid (NDT/Desiccated Thyroid Extract/DTE).
Contains details of all levothyroxine, liothyronine and combination products - excluding desiccated thyroid products. Details available vary by country and manufacturer.
The link below takes you to a blog page which has direct links to the documents from Dropbox and QR codes to make it easy to access from phones. You will have to scroll down or up to find the link to the document you want.
Thank you! Saddened to hear about the difficulties around liquid preparation but I guess that I shouldn’t be surprised. Reflects my experience of PA regarding getting correct forms of B12 preparations if at all. But thank you very much for all the links. Superb!
Some time ago, there were many issues getting hold of any liquids. I think the supply chains have improved. Either that or members have simply given up posting about their issues.
I think liquid Levo is prohibitively expensive, I dont hear of many members mentioning it now. I know GP's have to be dragged kicking and screaming to the prescription pad to dispense it, but if you cant tolerate tablets then they'll have no choice.
Salt cravings can indicate Addisons or adrenal insufficiency, another autoimmune disease, which having PA puts you more at risk of. Just something to be aware of maybe.
Can just indicate adrenal fatigue, which wouldn't be surprising after all you've been through! Adrenal fatigue can right itself with a little TLC: plenty of good protein, all nutrients optimal, lots of B vits and vit C, and plenty of salt!
So sorry that you find yourself in the situation that you are in.
Liquid levothyroxine would be a best option for you, in theory . It also has the advantage of facilitating a dose other than at 25,50,75 and 100, and the need to resort to halving tablets to get a smaller fractional dose. An endocrinologist is supposed to iniate it in the first instance. Sparklingsunshine is correct. Because it is so expensive, compared to tablets, you may find that despite being a very deserving case, you may have it refused. Even if you have a prescription for it, I suspect from comments made by various forum members, that the pharmacies may be losing £25 per bottle if they dispense it. Even if there are no supply problems or stock shortages, the pharmacies are reluctant to supply. It is difficult at every prescription to get the same brand, and pharmacies seem to be being ordered to go through central hubs, who will be "out of stock" when there is no stock shortage. If they phoned the distributor it would be sent out, but increasingly, they won't do it. It is better, but difficult and stressful to obtain as pharmacies are resistant to supplying it. It does also go out of stock. In the past , there has been none available of any make or strength.
I know of one respected private Endo who would give you thyroid medication with a TSH of 2.5 but he is expensive. Zoom appointments are possible. If this is of interest to you I can send you his name by private message, if requested.
Hi, I'd just like to comment on the last paragraph in your post.
About 18 months ago I began to develop difficulty swallowing. Tiny things, like my thyroid tabs, seemed to be the most likely to get stuck in my oesophagus. I had all the tests and cancer was ruled out, but for the last 10 months I have been crunching my meds into a paste before washing them down with a good glug of water.
I have noticed no difference in their efficacy.
So, if you do end up on thyroid medication, it might be worth trying my crunching method before insisting on liquid levo, as it's SO much harder to come by. 🫂
Relieved that you don’t have cancer affecting your swallowing but do hope that you find the cause. So unpleasant to not be able to eat properly. I do stick to soft foods or use drinks. I think though it helps to know that levo can be dissolved since I see so much saying it’s ineffective if taken wrongly.
Just for reference - a fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg. -
with T3 said to be around 4 times more powerful than T4.
As detailed previously I think given time you will need some form of thyroid hormone replacement.
Generally speaking the first treatment option is a T4 - thyroid hormone replacement - Levothyroxine which is a pro-hormone and needs to be converted in the liver in the body into T3 the active hormone that runs all your bodily functions much like the fuel that runs a car -
with the thyroid being much like a gear box - synchronising and supplying the whole body's need for thyroid hormones to enable the body to function and metabolise ' as normal ' and restore, repair and replenish itself itself over night ready for whatever the next day brings our way.
We generally feel best when the T4 is in the top quadrant of its range at around 80% with the T3 tracking just behind at around 70% through its range - and so at around a 1/4 ratio T3/T4.
Some find that T4 seems to stop working at some point in time and that by adding in a little T3 - likely at a similar level to that their thyroid once supported them with - they are able to restore thyroidal hormone balance and their health and well being is improved.
Others find they can't tolerate T4 at all and need to take T3 only - Liothyronine - and read we need around 50 mcg T3 daily - just to function.
Whilst others find their health and well being improved taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human thyroid gland and derived from pig thyroids, dried and ground down into tablets referred to as grains.
No thyroid hormone replacement works well until the core strength vitamins and minerals - those of ferritin, folate, B12 and vitamin D are up and maintained at optimal levels which we can advise on as some NHS ranges are too wide to even be sensible.
Depending upon your diagnosis you may need to keep your TSH suppressed :
The TSH is a very unreliable measure of thyroid status once taking any form of thyroid hormone replacement - and it is essential to be dosed and monitored on your Free T3 and Free T4 readings though I'm afraid once discharged back out into primary care you may find you are monitored on just a TSH reading.
You might like the book - Your Thyroid and How To Keep It Healthy - written by a doctor for patients to better advocate for themselves - written by Barry Durrant-Peatfield -
I found it helpful to have an idea of how the whole body works as one - with thyroid being very much like the conductor of the body's orchestra - and how everything is connected and has a ' knock on ' cause and effect.
I’m grateful for all the responses and wonderful information! Sadly it turns out I’m still in range with TSH at 3. It’s an increase for me and so in a way positive that I don’t have a growing functional cancer load but also a worry because I feel unwell even at this measure.
Thankfully pernicious anemia has made me extremely aware of the need for B12 co-factors to be at a good level. Possibly the only thing helping me from feeling worse than I do.
Re swallowing etc….failures to remove all malignant tissue is becoming apparent simply because I didn’t stand my ground for a complete thyroidectomy despite the private ultrasound report (from the ultrasound company recommended by Thyroid UK) saying both sides have malignant features. It seems it’s causing issues in my chest other places (possibly because hospital refuses to hear what happened at the fna) and the hospital also has refused to acknowledge it. GP is fighting to get me seen sooner but I have been left without cancer treatment for months now because of completely ridiculous mistakes.
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