Crazy Underactive Thyroid, Maxed out on Meds

[LeighJames]

First time posting to this forum.

I have had hypothyroidism for more than 24 yrs now and have worked my way up from 25mcg to 325mcg of levothyroxine.

For the last 3 yrs I have been steady and TSH has remained within 'tolerable levels'.... until last week.

Last week I had a blood test result of 29.18 !!!

Approx 3 yrs ago I saw an Endocrinologist, (the last time my levels spiked badly and I went up from 300 to 325mcg) who, at that time advised if my levels were to spike again, it was unlikely I could go any higher on levo, and alternatives would need to be considered. I asked at the time about T3, but of course was met with the "its all about the cost" reply.

He was, nevertheless, an excellent consultant and talked me through a lot of possible options I could try with regards to when to take my meds, and options for changing some of the other meds I was taking for my other conditions.

I have spent the last 2 weeks in and out of hospital for a Neuro issue and 2 Doctors I saw on Friday are both very concerned and have requested an urgent Endo referral.

(Im not sure how 'urgent' it will be or when I will get to see someone, so in the meantime I want to gather information and go to the appointment well armed with knowledge)

Im also aware that the fantastic Endo I saw previously has moved on to another hospital and Im concerned the replacement wont be as helpful, as some comments to a post I made on twitter would imply the clinic is now useless. Of course I understand everyone has different experiences of clinics and we are all different when it comes to our other conditions, medicines and history, but I cant help feeling a little anxious.

I was wondering if anyone has been in this position and actually managed to get T3 treatment or a better therapy than Levothyroxine?

[SeasideSusie Remembering]

LeighJames Have you ever had thyroid antibodies tested - Thyroid Peroxidase (TPO) and Thyroglobulin (TG)? If not then you need them testing because it sounds very much like you could have autoimmune thyroid disease (aka Hashimoto's) which is where antibodies attack and gradually destroy the thyroid. When the antibodies attack it can cause fluctuations in test results (your TSH spike is a good example if 29.18 is actually your TSH result) and symptoms.

Whilst you waiting for your 'urgent' appointment with the endo (and a lot of doctors dismiss antibodies as not being of any importance, generally because they know little about it), I suggest you get a private fingerprick test to do at home. You get your results back within 24-48 hours of them receiving your blood sample. And whilst you're doing that, get vitamins and minerals tested too as many of us Hypos (and Hashi's patients) tend to have low levels or deficiencies.

bluehorizonmedicals.co.uk/t...

medichecks.com/thyroid-func...

This test could answer a lot of your questions in a very short time.

[LeighJames in reply to SeasideSusie]

Thank you, yes the 29.18 is TSH result. As far as I know its the only thyroid test anyone has ever done on me.

Sadly I am not in a position to do a private test, financially. But I have also had advice from someone in the medical profession regarding the possibility of low Vit D levels and my antibodies needing to be checked and they advised that I ask for those to be tested. Of course the issue is I can ask, but getting someone to agree to testing them is the challenge, thanks to cost cutting across the NHS

Also a suggestion that cutting gluten out of my diet may help, as there has been positive results for some patients.

I have tried going GF in the past but find it costly and for the most part, the alternatives are unpalatable and high in sugar.

[SeasideSusie Remembering in reply to LeighJames]

I have tried going GF in the past but find it costly and for the most part, the alternatives are unpalatable and high in sugar.

Don't buy the GF foods then, prepare your own.

If you can't get the necessary tests done through your GP, and it's a fairly sure bet that you wont get FT3 done and NHS rarely do TPO antibodies and almost never do TG antibodies, then as it is very important to get all these things tested either save up, put it on your credit card, or ask for money for Christmas and do it that way.

Andyou wont know if you need T3 unless FT4 and FT3 are tested at the same time, regardless of whether the NHS will fund T3 or not.

[LeighJames in reply to SeasideSusie]

First of all, thank you, but I must say yours is one of the reasons I so rarely use forums. People make assumptions. There is NO malice intended with this reply, but I do feel that I need to explain myself further, as you may just think Im being awkward in refusing the help you are suggesting.

I am disabled. I have multiple chronic conditions which affect me physically and mentally. I have been unable to work for more than 10 years and I only leave the house if I have someone I trust with me. (Usually my husband, at weekends)

My husband works away all week just to keep us on an even footing, financially. We are not one of those "families" lucky enough to have savings, a credit card or people around us who can afford to give money at Christmas. My husband has no other family, and my mother is a 75yr old pensioner I rarely see because neither of us can afford the petrol to travel the 2 hr journey.

This is in no way meant to be a "pity post". I simply want others to realise that whilst you may think your suggestions are "helpful" they can actually be hurtful to those of us who dont have those options available to them, regardless of the reasons.

Also, with regards to preparing my own GF foods, due to my other health issues I am not 'safe' in the kitchen to prepare anything other than the simplest of meals. I certainly dont have the strength, energy or am ever pain free enough, to bake GF bread (for example).

Im lethal with a knife, a pan of hot water or anything that weighs more than a mug of coffee (and on bad days even that has to be a travel mug to prevent spillage).

[Puska in reply to LeighJames]

I think it’s awful that T3 is not always included in thyroid testing. In Australia they always test for TSH, T3 and T4 and there is no charge. They will test for antibodies if the Doctor requests it and again that is free. Hope you can sort something out LeighJames but that TSH needs to come down.

[SeasideSusie Remembering in reply to LeighJames]

A very good example of why giving as much information as possible is helpful, then people don't make assumptions.

[Charliebrowne in reply to SeasideSusie]

That looks to be very reasonable. I wonder why reverse T3 isn't included?

[SeasideSusie Remembering in reply to Charliebrowne]

They both do another test which includes rT3 as well. RT3 is an expensive test and requires a venous blood draw. And it's not a test needed unless there is something specific that suggests it might be such as a high dose of Levo, very high FT4 and low FT3.

[SlowDragon Administrator]

Ask your GP to test vitamin D, folate, ferritin and B12.

Also ask for thyroid antibodies to be tested and for coeliac blood test. The coeliac blood test is very unreliable, but it might get the idea of there being a malabsorption issue into your GP's head

Have you ever had an endoscopy to investigate coeliac or h pylori or other gastric issues

Low stomach acid is another consideration

Lots of posts on here about how to improve with Apple cider vinegar or Betaine HCL

thyroidpharmacist.com/artic...

Other things to help heal gut lining

Bone broth

thyroidpharmacist.com/artic...

If you have raised antibodies (Hashimoto's) then food intolerances are very likely. Gluten most likely, followed by casein in cows milk

Going strictly gluten free doesn't necessarily mean great expense. Fresh veg, meat and fruit are all gluten free. Home baking with gluten free flours. I agree nearly all commercial gluten free cakes etc are far far too sweet.

[LeighJames in reply to SlowDragon]

Thank you.

If I can get in to see my awesome GP, then I am fairly confident I can get her to arrange all these tests, but she is not easy to get an appointment with. She is well loved and takes her time with all her patients but it does mean shes always running an hour late and you can wait a month to get in with her. Will be pressing to see her as soon as I can though.

No, Ive never had any procedures to investigate my stomach, and other than IBS, im not aware of having any problems there. I am currently taking anti-inflamatories so need antacids as well but I try to only take them for 2 week periods to reduce the risk of harm to my gut. I had managed to come off them for the last 5 years but recently had to start them again due to my arthritis and now nerve inflammation in my neck (Diagnosed last week as Horners Syndrome)

I have previously tried Apple Cider Vinegar but struggled with it. I have a useless gag reflex and if something tastes bad then it wont go down. I know I know, I sound so pathetic, but honestly, its been an issue all my life. I have to find ways I can hide liquids in other drinks or foods. Give me a coated pill to swallow, even the biggest of them, and I dont have an issue, but liquid medicines and alternatives such as ACV make me gag violently. (My husband and I are complete opposites, he cant swallow a pill to save his life and has to have everything in liquid form)

Have never heard of Betaine HCL. Will research this.

Sadly, when it comes to making food at home, its not an option. I am disabled and have multiple chronic conditions which affect me physically and mentally. My coordination and cognitive functions can be severely impaired at times. I struggle to prepare my own meals and if my pain levels are bad then eating is either too much trouble or I go for whatever will hurt the least to "make". Usually something I can simply unwrap.

Everything has to come into the house ready prepared, such as fresh veg in steamer packets, the best options I can find for ready made meals, or frozen foods. I do my best to eat fruit and veg every day, as well as including high protein and fibre in my diet, but it all comes down to each day and how Im feeling. Im lethal with a knife, a pan of hot water or anything that weighs more than a mug of coffee (and on bad days even that has to be a travel mug to prevent spillage). Im also not really all that safe with hot microwave foods but its my only option so I have to try to concentrate on what im doing to avoid steam burns. (My brain fecks off elsewhere when im doing things, and I lose track of where my hands are meant to be... honestly I sound like I should be put in the bin, but I can laugh about it most days, have to laugh to stay sane )

[ITYFIALMCTT in reply to LeighJames]

LeighJames From the sound of it it reads like your GP would support an application for PIP which might help out with some of the costs associated with being unable to prepare your own food etc.

It's intrusive to ask but I'm wondering if you've applied for PIP for both the care and mobility components? It's horrible if you did and were turned down.

[LeighJames in reply to ITYFIALMCTT]

Yes I have and do receive a PIP award.

[Clutter]

LeighJames,

It's possible that the illness which has had you in and out of hospital has caused the elevation in TSH. It would be good to have the TSH test repeated in a couple of weeks to check.

If TSH remains high you will need an increase in Levothyroxine dose. There is no upper limit, I don't know why your endocrinologist would have suggested there is.

[LeighJames in reply to Clutter]

All medical professionals are shocked at the dose I am on. There are risks with higher doses.

[LeighJames in reply to Clutter]

Im not sure that the recent reason for hospital visits is the cause of raised TSH but I am wondering about the change in medication.

I have been diagnosed with Horners Syndrome (in its most simplest terms, I have a wonky nerve going up to my eye, casing a shrunken pupil, change in sensations to face and constant headache due to inflammation of the sympathetic nerve)

I have avoided anti-inflamatories for the last 5 yrs and managed my other conditions, including fibromyalgia and osteoarthritis, with other pain relief. However, my OA has become so bad in the last 6 months I have had to go back on the ibuprofen, but I was limiting myself to only taking it for a max of 2 weeks at a time with as long as possible a break in between before starting again. The OA in my neck can cause such unbearable headaches and the Ibuprofen is the only one of my pain meds that helps ease them from an 8/10 pain to a 3/10. Ive had yrs of experience in working out what my body will tolerate and when best to give it a rest. So my Gp trusts me with my 2 week cycle of ibuprofen.

I have been doing well, 2 weeks of ibuprofen and of course the obligatory antacids to protect the stomach. No significant issues with stomach, no acid or IBS flare ups. Then I got a new problem, long story short, the Horners syndrome. The only thing that touches the pain that cuases, (which is as bad as those dam OA headaches), is the ibuprofen. So now im stuck on it until such time as the nerve repairs.

Im wondering if the antacids are reducing my gut acid too much and reducing my absorption abilities? But, at the same time I dont want to take the Ibuprofen without the antacid as I know then I could be facing high acid issues.

[LeighJames in reply to Clutter]

Sorry im answering you back to front. Regarding the issue with the dose, I have not seen an Endo recently, but the one I saw 3 yrs ago and all GPs Ive seen since then have all said that the dose im on is considered to be very high and they would be extremely reluctant to increase it further. The 2 doctors I saw in hospital last week both seemed very concerned and it is them that want me to go back to see an Endo again.

If it was simply a case of increasing my dose, surely my GP could do that without me needing to see an Endo? I am therefore assuming that the Endo referral has been asked for because they are worried about my TSH and the levo dose im currently taking.

[Clutter in reply to LeighJames]

LeighJames,

325mcg is a high dose but there are people taking taking considerably higher doses. Malabsorption is often the reason people need higher than normal doses. Ruling out coeliac disease as a cause of malabsorption would be a good idea. As you say, it is possible that the antacids have reduced stomach acid which may be reducing absorption.

Your GP could increase dose but obviously isn't confident that it is the right action so has referred you to endocrinology.

[helvella]

Yours is a case in which we really, desperately, need FT4 and FT3 to make any sense.

It could be that despite being on a fairly high dose, you are not absorbing it adequately. I responded just the other day pointing out that in the USA there are at least four makes of 300 microgram levothyroxine tablet. They wouldn't make them if people didn't need them.

Your TSH is high despite 325 micrograms:

If your FT4 is low, there is very likely an absorption problem.

If your FT4 is high and your FT3 low, there is a conversion problem.

[helvella in reply to helvella]

Apologies, meant to include a link to the thread:

healthunlocked.com/thyroidu...

[LeighJames]

Can someone please advise how these companies:

bluehorizonmedicals.co.uk/t...

medichecks.com/thyroid-func...

can test so much with a finger prick of blood, when they draw multiple vials out of me to do a standard screen in the hospital?

Ive been having blood tests for years and Im very confused as to how they can have enough in a finger prick.

I had such a lousy blood draw once, due to my veins, but the nurse sent it off anyway, and they refused it saying it was insufficient to run the test and that was only for my TSH. (It was more than a finger prick but only 1 or 2 mls)

[Clutter in reply to LeighJames]

LeighJames,

They don't use blood spot tests on card some companies use. You prick the finger to draw blood to fill a microcontainer which is smaller than the vaccutainers used by phlebotomists.

[LeighJames]

Challenge 1 - get appointment with awesome GP - Challenge complete.

Going to see her next Weds' and will discuss options and ask for all these blood tests to be done in advance of Endo referral. If I can't get them through her I know none of the other Gps at surgery will agree to them.

So to summarise, I should ask for the following blood work:

FT3, FT4, TT3, TT4, TPO antibodies, Tg Antibodies

Vitamin D, B12, Folate levels

Ferritin levels and coeliac test

Did I miss anything? *wonder if I ll have any blood left *

Must also discuss possibility of recent med change impacting on gut function (antacids) and as a side to all of this an FSH test for signs of perimenopause. (yeah, cos thats looking likely as well).

THANKS for all feedback so far.