I have my appointment with the NHS endocrinologist on Wednesday and I'm getting a little anxious about getting what I need from it. I'm expecting resistance to my requests but thought I should prepare for a best case scenario. So here is what I've thought of to request - is there anything I'm missing? I'm well aware I'm unlikely to get all, or even any of this!
- repeat thyroid panel test - not just TSH (I have self increased my levo dose to 100mcg)
- vitamins tested - vit D, b12 - others??
- iron panel test (my iron and ferritin levels have been low)
- minerals testing - copper and zinc ideally. I'm supplementing with zinc already but have read that I should probably have got these checked before. Same with magnesium.
- Adrenal testing? Is that ever available on NHS for hashis patients?
- sex/fertility hormones repeat testing - I'm trying to conceive and these were last done a year ago, mostly before my hashimoto's was discovered
- Once thyroid tests results back, if T3/T4 conversion not improved then trial of T3??
Is there anything I'm missing?
I've already had a test for coeliac and h pylori and both were negative. But I'm still having some stomach issues and mushy stools (in the morning). I had stomach cramps last week for the first time since cutting out gluten and can't think of anything I ate that contained gluten. Can I request more tests related to these/food sensitivities, or perhaps I should try and get a referral for a gastroenterologist? My brother has recently had an endoscopy and they found diverticula. He wondered if an endoscopy could find out if I had inflammation in my stomach from triggering food, but I haven't read about this with hashis/thyroid conditions so I assumed that the inflammation wasn't visible. Does anyone know about this? As well as being gluten free I don't eat much dairy (but there is lactose in my levo anyway) and have cut out soya. Wondering if I could be reacting to nightshades but would be hard to cut them out. Am also wary of depriving myself of nutrients I need, especially when trying to conceive. This is why I'm reluctant to try a more extreme elimination diet.
Sorry for all the questions - one thing just leads to a load others!
Thanks so much
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The only adrenal test available on the NHS is the short synacthen test where your adrenals would have to be completely dead for it to show positive. They don't offer the salivary cortisol tests.
I doubt an endoscopy would be of much use regarding food sensitivities. The NHS are pretty poor when it comes to functional digestive issues and often prefer to hand out PPI's, laxatives and stool softners rather than finding out why the issue is happening. For food sensitivities the gold standard test anyway is an elimination diet, theres nothing available that comes close to it. I'd recommend trying the low FODMAP diet.
is this a recommended thyroid specialist endocrinologist, or is this just local endocrinologist (vast majority of endocrinologists are diabetes specialists)
How long since you have had increase to 100mcg levothyroxine daily
Do you always get same brand levothyroxine at each prescription
Ideally you would have got full thyroid and vitamin retest before consultation
Avoid getting blood test done after consultation if it’s not a very early morning appointment
And that’s before you even look at what you ate those days which could contain more of the vits etc.
Lactose free milk, cream and yogurt do it to me.
It’s a real minefield figuring out what’s doing it. A low fodmap/paleo/autoimmune diet has really helped me. That and a pill cutter to split the bigger doses of vits across the week and not take daily or alternate days etc.
Accord T4 gave me an upset stomach (contains lactose).
Eating in a 12 hour window has stopped all the silent reflux symptoms too.
I’ve gone from 8 poos a day to 1-2 and sometimes they are a genuine log - awesome 👏 I sit smugly like those people on the dulcolax adverts 🤣
I wonder if anything there might spark an idea?
I used to get the classic diverticulitis second tiny poo later symptom but that has gone since getting my thyroid hormones close to optimal and digestion sorted.
Hi, I’ve just joined the group and your post stood out in regards to adrenal testing.
I have the joy of having Addisons Disease (along with the rest of gang - Hashimoto’s, T1 Diabetes, Pernicious Anaemia 😆). The Synactin test is what I had to diagnose this condition as it is used to detect adrenal insufficiency (under active drenals).
For my hospital appts I am checked for my U&E’s - Urea & Electrolytes. Generally if electrolytes are off then this might be an indicator that the adrenal function warrants further investigation which, may lead to the synactin test.
My levels for sodium, water and sugars were off the scale which is what U’s & E’s cover at the time of diagnosis for Addisons. Rather than requesting a synactin test I suggest requesting that your U’s &E’s are tested, it’s a pretty standard test and if your electrolytes are off then I would expect the doc to look into this.
Full blood count is also a standard test and you will probably get this anyway, if not the request this, it will detect if iron levels are off
Docs have the habit of looking at the numbers and going by those rather than the symptoms that is experienced. It can be frustrating but stick in there. It’s your body after all.
Hi, when you say off the scale are you meaning high/low or a mixture of both? Mother outlaw has low sodium issues... as well as a myriad of other issues which I think are mainly drug side effects as she does like to mix a drug cocktail 😆
She's a firm believer that the magic pill is out there.... 40+ years of trying... no breakthrough yet!
Symptomatically I was drinking copious amounts of water as I was perpetually thirsty - dehydrated.
I was unable to retain salt, I had huge cravings for sodium. I don’t remember the sugar side.
So fluids would have indicated as being low, very low as I was unable to retain them.
Sodium / salts would also have been very low
With Addisons it’s pretty extreme - salt cravings and thirst
I’ve read that there are other conditions that can cause low sodium, even as simple as not taking enough in through food or loosing salts through sweat due to hot conditions
Thanks, I think her low sodium is due to the religious drinking of 2L water a day as she was once told to do many moons ago, not sure if it's just a habit, the side effects from some of her other drugs give her a dry cough, so on it goes... though possibly not ideal when you are nearly 90 perhaps?! I did wonder about making up salt capsules to add to her drugs haul
She dips in and out of pre-diabetic range I notice over the years...
In answer ot your questions - I upped my dose to 100mcg 6 weeks ago. I get Mercury or Accord - have tried and failed to get them the same each time but I don't seem to react to them anyway.
This endo appointment is with the local one, who doesn't seem to be on the list
It's iconic liquid magnesium, chosen because I thought would be better absorbed in liquid form. Is it an ok one to take? I have a feeling it's not that though because I wasn't taking it over xmas and didn't notice any changes. Same with the zinc and vitamin D. Although maybe that wasn't long enough without them to have an effect? I did notice less mushy poos for a week or so about 3 weeks into the levo dose increase which made me think it was to do with my thyroid doing better (I also started having more energy) but it didn't last (although the energy increase has stayed).
I've considered paleo/fodmap diets, am just not sure about how to make sure I get enough nutrients etc while I'm doing it. Plus it looks really hard! Don't have any obvious reaction to dairy, having cut it out (except for the levo) for a good chunk of time. But maybe the lactose in the levo meant the elimination process didn't really work.
I do get the small, second poo sometimes, didn't know that was meant to be a symptom of diverticulitis.
The low FODMAP diet is a bit omplicated to start with. It really depends how much annoyance you are getting from digestive symptoms as to how dedicated you want to be to do it.It would help if you had a dietitian or nutritionist to help see you through it for sure so perhaps you could ask for a referal to dietitian?
The Paleo diet is relatively simple once you learn whats allowed and what isn't. There are stacks of good recipes online once you have the right things in the freezer/food cupboards.
Any specific diet takes a bit of looking into, preparation both physically with shopping, recipes etc and psychologically to gear yourself up for it.
Diverticulitis is quite common in the West, often due to impeded elimination. For those of us with thyroid disease the lack of enough replacement medication for an individual effects the whole digestive system, from the enzyme supply in our mouths to the necessary amount of stomach acid int our stomach bag to switch on the various digestive mechanisms, enzymes, bile etc.
The T3 part of the equation assists the vital mucous production down our throats along our digestive tract, our efficient emptying of the gallbladder,and has a vital role in the peristalsis of our colon (where the diverticulitis pockets may form) So you can see, if we dont get optimum replacement thyroid meds, we can hit many problems due to food not being broken down efficiently,sapping energy, sitting there too long, and stretching pockets in the colon as a result of this and constipation.
You cant detect diverticulitis from and endoscopy (down the throat) but you can from a colonoscopy up the anus.
Once you have diverticulitis, (which you may not have) , there is no cure as such, the pockets are there. Bits of food as it moves through the colon to be eliminated can sometimes get stuck in the pockets, it is the putrifying of this food that can cause pain or upsets. The management is usually to not eat pips in tomatoes, strain fruit with seeds, avoid bits of nuts (eat nut spreads) etc, drink 2 litres of still water a day, avoid straining when eliminating.
Aloe vera and or Slippery Elm powder used when necessary help soften the stools and reduce inflammation.
If you are going to do any elimination of foods, it would be best to do if you can with a nutritionists advice. Usually something like eliminate only 1 food at a time and monitor for 3 weeks with a diary, if no change to symptoms then reintroduce and try 1 other food. It takes time to do this, but eliminating multiple food groups is not the best start for conception.It can be tricky to pin point a culprit food, and our bodies develop coping strategies to foods that may irritate. For example typically, we can eat the 'irritant food' on a Monday, the inflammation response may well be Tuesday, and the pain /mushy poo may be on the Wednesday depending on your gut transit time. Thats why is far more effective to do 1 food at a time and monitor.
Common culprits ' can ' be gluten, dairy, soy, onions.
Finally low stomach acid is often associated with Hashis/thyroid disease . The symptoms of which are identical to that of temporary over indulgences where we may have reach for antacids. The difference is with low stomach acid the symptoms are there before or with every meal.Antacids further lower our already low stomach acid interfering with our absorbtion efficiency, causing more thyroid symptoms.
There is no NHS test for low stomach acid. Sometimes following and endoscopy you may see a comment on the report about the amount of stomach acid in the gut bag that day ie whether it was alot of a little. I believe there are some other invasive test but most likely private.
What you can do for yourself just purely as a rough guide and is non invasive and not 100% accurate, but i found very helpful is the bicarb test for stomach acid. You can research it. Its is done first thing in the morning on waking, before teeth cleaning,any water or food, you add 1/4 teaspoon of bicarbonate of soda (from your baking cupboard) to an 8 ounce glass of still water, and drink it down in one. The thinking behind this is that if you belch if you belch within 3 mins you have a good amount of stomach acid (ie your acid has neutralised the alkaline bicarb) if you belch in 4 mins its average, if you belch after 5 mins or longer ,it may indicate lowish stomach acid.
As i said, this is a rough guide, for me it was valuable, I used this info to warrant saving up for the private VEGF saliva test (no longer available sadly) this gave me a result of borderline achlorhydria (low stomach acid) I spent 6 months adding in small amounts of Betaine (couldnt tolerate very much) retested after 6 months to find my stomach acid was comfortably back in the normal range. It made a profound improvement to everything,particularly absorbtion of thyroid meds. I wouldnt say I am sorted by any means, but its possible it may be of help to you.
You can get a lactose intolerance test organised by your GP but has to be done at the hospital.
Good luck with your Endo appointment, I hope they listen to you and are kind. Go with your list so you feel more in control, lots of "would it be possible please to have these tests done" etc etc.
Thank you so much for this, it's so helpful. I am already taking some betaine and pepsin with protein meals (I worked out my stomach acid must be low because I needed to take 4 tablets with a protein meal before feeling any discomfort, having read this as a way to determine your dose). I think it has made some difference but will know more when I have my vitamin/iron levels retested. I didn't know about that bicarb test so will try that tomorrow morning! Will also ask about a lactose intolerance test.
With the food intolerances, that's exactly what I was thinking. Avoiding everything all at once looks so difficult and not good for you in the short term. I think I might take out nightshades for a while though and see what difference that makes, or what effect there is when I bring them back in. There are also food intolerance tests online where they take a piece of your hair and claim to be able to tell all manner of things from it, including also vitamin/gut imbalances. I suppose this is too good to be true though? Does anyone know if they are accurate?
The hair one is interesting , expensive, and yes does highlight some things, not many minerals though. I did this before the HCL stomach test, it just really confirmed I was on the low side of most minerals.To be honest its all about the gut and good absorbtion. If we have thyroid disease many many of us are prone to deficiencies. So key is to improve absorbtion + take a good probiotic for 2 - 3 months and reboot your gut flora, these sometimes stop mushy poo. Optibac are reasonable at surviving gut acid and well priced, one type at a time though, they do a range. Symprove is reportedly good but pricey.
I would push for the lactose breath test, its non invasive, and if it does turn out to be that ,you will be prescribed lactose enzymes most likely, and or you can relax a bit about your meds excipients if you cant get ones without quickly, or if someone gives you dairy for a meal by mistake. Lactose intolerance is a pain but not as detremental as coeliac disease.
I would agree with other too about amounts of Mg and C, the tabs are often quite high doses, you could halve your usual daily dose and see what happens. As always alter 1 thing at one time or you wont know what helped or what hindered. Zinc can ce a gut irritant too perhaps halve rda........
Thanks. That's a good idea to try reducing a dose of one thing at a time. Have been taking probiotics for the past year or so, haven't noticed much obvious difference.
Saw this hair vitamin/mineral/gut/food intolerances test for £25!
Hi, I have done a hair sample one but it only really tells you about things you have eaten recently and I'm not convinced it is particularly accurate. I then went on to do this one... lifelabtesting.com/?raf=ref... which actually picks up on the bodies IgG4 antibody response. It was the Complete Intolerance test that I did, bit pricey at £129 but you only need to do it once
It helped me literally sort the wheat 👍from the barley👎 and the acceptable gluten free from the buckwheat👎... really helpful at fine tuning your diet without cutting loads out and gives you a better idea which things to reduce and still get away with... a real confidence boost when food becomes more akin to russian roulette!
I have histamine intolerance to so though it says I'm fine with all fish except caviar(untested)! It would need to be really fresh fish or the histamine would get me 🙄
Did that bicarb test this morning and I didn't burp at all! Surprising because I've been taking the betaine and pepsin for 2 months or so. But at least it's something I can work on. I will try the test again a few times in the next few days in case it was a fluke or something. Maybe my bicarb is so old it's lost its potency?!
It is a basic test, maybe its just not suitable for you. The other thing to look at would be B12 Active (not NHS available) but more accurate than the Serum B12, but better to get one done than none.
Have a look at the Bristol poo chart if you are not familiar at least then when you go for your appointment you can refer to a chart that is known and favoured.
Just a little update - had the endo appointment today and it was so much better than I was fearing. She is going to test for lots of things - thyroid panel, antibodies, iron panel, B12, selenium, zinc and fertility hormone tests is what I can remember. And she's set a target of under 2 for my TSH in order to conceive. All things I thought I was going to have a battle over! For the stomach things she suggested going back to my GP for a referral to a gastro specialist which I'll do. And the most surprising thing was she was fully supportive of me deciding to increase my dose myself - I thought I'd get another telling off!
I know all these things are what we should expect ideally but it was such a relief from how I'd been treated at the GP surgery (think I might switch practices as well) - where, when I voiced concerns about my high TSH and getting pregnant, I was told 'most couples conceive when they go on holiday so just relax'. #$@&%*!
Thanks again for all the advice. I'm sure I'll be here again when I have more results.
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