I have been a member here for many years and have learned so much for which i am so greatfuu,
but i know need some help , im at a loss and find it hard to put this down so please hang on in whils i fumble through best i can .
i was 1st dignosed roughly 40 years ago by a psyciatrist because i was sleeping 24 hr and difficut to wake so they thaught i was mad ( i know i know )
its been prety much a rollercoaster ride since but i have managed to stay in contol of it upuntil 2021 .
sept 2021 had felt off for a while ( usual testing had gone out the window because of pandemic )
managed to actualy get a face to face appoint ment in a farsial situation that i cant go into but it has left me terrified of a certain Dr . he did a blood test full blood count
on 225mg (ikow its a lot )
TSH 5.96 (0.35 - 5.5)
T4 19 (9.0 - 23)
test marked borderline in danger of developing hypothroidism retest in 3 months
Dr hadnt even acknolaged my dignosis .
he called to tell me i was mentaly ill depresed and would send me for counciling
i still had some clear thinking and after another horrendus consultation he agreed to increase an extra 25 every other day. but recomended mental health theray because in his oppinion that was the problem .
few months ago i started to feel really really bad , pretty much how i felt 40 years ago when first dignosed . got the strengh from i dont know where to go in for a blood test .
i was in a state refused all bloods apart from thyroid ( nurse wanted weight blood pressure etc you know the score ) i just wanted out of the building fast . pluss could not handle being dignosed with anythig else for them not to treat .
Thursday the Gps pharmasist calls
TSH 43.1 (0.35 -5.5 )
T4 9 ( 9 - 23 )
no T3
asks if im taking the medication
he's given chapter and verse and goes off to consult a Dr . Pharasist calls
back Dr thinks you arn't taking the extra 25 correctly and to just carry on same dose
he had spoken to the sadist i had seen in 2021
you can imagine how i felt . but i managed to argue some form of case and of he goes to find a different Dr .
this time i'm to wait for the receptionst to call to arrang an appointment to acctuly see a Dr
i have incresed off my own bat an extra 25 everyday so 250mg a day in the hope i can stay alive untill the appointment next Friday .
some more background
i have recenty found out my nephew was dignosed with an autoimmune Piturity condition i dont know what . sister and niece both hypothroid .
if you have stayd to this point thank you
my brain is mush so its a strugle getting this down .
whwre do i go from her i'm at a loss ?
PS im definatly not mentaly ill .
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crystalcat10
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OMG i have just re read all of this and i am so sorry for all the spelling and grammer mistakes . Im usualy spot on . brain and eyrsight are suffering .
When do you take the Prucalopride? I'm not familiar with this medication, but as soon as I saw that it's a bowel medication, it rang an alarm bell. Could it be causing malabsorption of the levothyroxine I wonder.
in all honesty i think the bowel problems are caused by the thyroid problems , but can i get the Drs to do joined up thinking answers on a post card please .
basicly 5 years ago after being in a host of very expensive investigations for constipation i was told virtualy non functioning bowel nothing can be done take these .
i have since found out my TSH at the time was over 5
' i think the bowel problems are caused by the thyroid problems'
I think that it's highly likely too. Obviously, not being medically trained or qualified, I can't tell you what to do about the bowel medication. But I can suggest what i would try in your situation. I would stop taking the Prucalopride, and go down the dietary and OTC supplements for the constipation. Maybe start a new post asking for members who've also had major constipation issues to tell you what works for them. I know this is not an uncommon problem here, and docs are generally no help at all.
i live im the North East of England just about all of the Drs in my surgery & localy trained at
Newcastle Univeristy & RVI hospital . they worship at the feet of a certain proff , so you see my difficulty in getting propper testing . its just dismised outright .
i did try monitor my health fiinger prick test twice in 2021 it was awfull couldnt get enough blood and husband passed out .
gluten does give me isues so i avoid it , so a test would not be viable .
going by family ( both sister and niece both have hashimoto anibodies ) it must be autoimmune .
Nephew autoimune pituity condtion . Tragically died recently age 30.
If avoiding gluten it needs to be absolutely strictly gluten free to be effective
You don’t need to stop B12 or vitamin D until day before test
It’s just vitamin B complex that needs stopping 5-7 days before test, as contains biotin.
Generally recommended to be taking vitamin B complex for folate and to keep all B vitamins in balance
once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 until serum B12 over 500 (or active B12 over 70)
i am vegeterian and my diet is all over the place at the moment to try to negate weight gain , im mostly surviving on protien shakes and bars . i know this is wrong but the weight gain is an issue that really plunges me into a bad place . i am active (very)
i'm that anoying women in the front row of excercise classes with the abs and biceps , i have trained hard and i'm tryimg desperatly not to lose what i see as part of my identity .
i have had thorne basic b before and got on well with it but as you say the cost is now a bit steep . will look up alternetive .
do you think its ok to take the extra 25mg every day and just tell the Dr at the appointment on Friday as a foregone conclusion .
B12 787 (190 - 910 ) i was swallowing handfulls of the stuff
serum folate 24 (3.3 - 99999.0 )
ferritin serum 30.7 (30.0 - 400 ) yes i can see thats very low , nothing was said
serum alkaline phosphatase 26(35 -120 ) its below range not sure what that is
dont have any soya in my diet im very carefull to avoid it . shakes are whey protien .
i have had a thought just now about iodine
i am very carefull to avoid this and check all ingredients on everything but milk does contain naturally occuring iodine dependant on what the cows were feading, on time of year etc . its certainly not listed as an added ingredient on anythig i consume , but given my high consumption of whey could this be an issue ? to the extent it would drive my TSH sky high .
yes ferritin is far too low …..typical on vegetarian diet
Get full iron panel test
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes:
Males 16-60: 30-400 ug/L
Female's: 16-60: 30-150
Both >60: 30-650
The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘
I wouldn't worry about doing any private testing at all right now. If you're not absorbing the levothyroxine, chances are you're not absorbing much in the way of nutrients from your food either, and it doesn't much matter whether you have autoimmune thyroid or not right now. Pardon the expression, but you need a 'good clearout' first and foremost. So get the constipation sorted first, that's the number one priority. Stop taking any vitamin supplements because you're unlikely to be benefitting from them, and look into supplements that can help your constipation, like high dose vitamin C and certain forms of magnesium.
Don't stop taking the levothyroxine though, even though you currently don't seem to be benefitting from it.
Just keep in mind that GPs/conventional medics (private or NHS.) have little to no understanding of gut/dietry issues, so you're on your own with that.
Prucalopride should only be prescribed by a clinician with experience of treating chronic constipation, and who has reviewed the woman’s previous course of laxatives. If treatment with prucalopride is not effective after four weeks, the benefit of continuing treatment should be reconsidered.
this i know it was prescribed by a specialist and at the time was very expensive
it at the time cost the NHS more than T3 and probably still does so i enjoy the irony
( Dont judge )
its is the only thing that works . i had to have a colonoscopy as part of the investigations and even the bowel prep failed . its that bad .and not pleasant .
There was a really informative TV series on channel 4 a while ago. Might be worth watching to get some tips on how to deal with constipation. channel4.com/programmes/kno...
When I was having gastro issues/constipation I found a good quality apple cider vinegar with mother really helped.Once or twice a day mixed with a little water.
Stop eating salad and increase your carb intake instead. Salad is insoluble fibre which contributes to constipation, carbs are soluble fibre which helps gut motility. Do some research to learn more medicalnewstoday.com/articl...
Please note there are quite a few different types of laxative and it is worth experimenting with the different types rather than sticking with the same kind all the time :
Since you can't get things moving I would suggest avoiding the bulk-forming laxatives and dietary fibre e.g Fybogel, at least until you have cleared yourself out. They will probably just block you up more.
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Some links from the BNF - British National Formulary - which lists many drugs and medicines that doctors prescribe :
If you look at a particular product you can tell whether it can be bought without prescription by looking at the Medicinal Forms in the BNF and then looking at the legal category. For example, take a look at the medicinal forms for sodium picosulfate.
1) Prescription-only medicines are designated by the letters POM in a little box.
2) Medicines which can be bought in pharmacies without prescription (in the UK) are designated by a P (Pharmacy-Only) in a little box. Note, you need the permission of a pharmacist for buying Pharmacy Only products and they can say no. Just go to a different pharmacy and ask there. If they only have one pharmacist and he/she is at lunch then they will say No.
3) If there is no legal category it can be sold anywhere without prescription.
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Some things you can try for constipation that do not require a prescription :
1) Vitamin C : There are various different types, but ascorbic acid is the most well-known one. Since it is an acid you might need antacids if you take a high dose and your stomach is delicate.
Note : If you choose to take a mineral ascorbate e.g. sodium ascorbate or calcium ascorbate you must remember that you aren't just getting vitamin C you are getting sodium or calcium as well, and for some people that might not be desirable.
2) Magnesium citrate : This is cheapest to use in powder form and can be bought quite easily online. It comes in capsules too. You can buy it from Amazon, but can probably find it cheaper elsewhere online. A nicer tasting possibility is this one, but it is an outrageous price (in my opinion) :
3) Sodium picosulfate, aka Dulcolax Pico Liquid : Buy it from pharmacies by either name. This one is extremely effective, and would be my favourite if nothing moves.
4) Lactulose ; Senna ;
There are others listed in the BNF, but the above are the ones I am most familiar with. You'll have to check for the possibility of adverse effects, warnings and contra-indications. I'm not going to mention dosage - I'm not a doctor and the information can be found online in the links I've already given.
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If your rectum is blocked then before using laxatives you should empty it with glycerol suppositories or with micro-enemas :
Some pharmacists will ask how many you want of the above suggestions, rather than selling you a whole box. The micro-enemas come in boxes of 12 (I think). I'm not sure about the suppositories.
but in all honesty if the thyroid was sorted would the bowels follow suit
I really don't know - they might do. My thyroid hormones are not a million miles away from where they should be but I still have bowel issues caused by non-thyroid health problems that are permanent.
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