49 and have had quite a few health issues over about 4 or 5 years now, mainly being very tired, lethargic, foggy.
About 18 months ago after numerous doctors appointments & tests I was diagnosed with CFS, then late last year I was also diagnosed with menopause & under active thyroid, I had a fall/blackout prior to that which also led to a diagnosis of sinus tachycardia arrhythmia.
I feel like a hypochondriac but try to work & stay as normal as possible. For the past few weeks I feel like I’m going backwards health wise, I got my thyroid tested & it was ok so that’s ticked off but I feel like my body is leaden, a pressure pushing me down. I have headaches, aches & pains throughout my body, I’m doing much less & sleeping more - I’m still working full time but my hubby is furloughed so he’s ‘keeping’ house.
I am feeling quite lost, tired & fed up! I really don’t want to take time off work if I can help it, I’m pretty much office based in a factory.
This is probably more of a statement than a request because I know you all have the same issues but I feel absolutely knackered & worthless & helpless at the moment .
Any advice would be appreciated xx
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I got my thyroid tested & it was ok so that’s ticked off but I feel like my body is leaden, a pressure pushing me down. I have headaches, aches & pains throughout my body, I’m doing much less & sleeping more
"OK" is meaningless where any test is concerned. What are the actual results, please post them with their reference ranges so that we can try and help you.
For a full picture we really need to see:
TSH
FT4
FT3
Thyroid antibodies
Vit D
B12
Folate
Ferritin
Post what you have and we can start from there.
Also, what brand of Levo are you taking and what dose?
Do you take any other medication?
Do you take your Levo on an empty stomach, one hour before or two hours after food? Do you take Levo on it's own, away from any other medication or supplements by 2 hours (some need 4 hours).
It would appear that your post has been duplicated, I have deleted the other one.
‘TSH alone is usually adequate for monitoring thyroxine replacement
It isn't but unfortunately doctors are so ignorant about treating hypothyroidism that they don't know that just testing TSH is totally inadequate.
TSH result suggests appropriate T4 replacement.
Serum TSH level dane normal result 2.2 mu/l 0.10 - 4.00mu/l
The aim of a treated Hypo patient on Levo, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their reference ranges, if that is where you feel well.
So your TSH is telling us that you are undermedicated and need an increase in your dose of Levo.
TSH is not a thyroid hormone, it is a signal from the pituitary to the thyroid to make hormone if it detects there's not enough. The thyroid hormones are FT4 and FT3 so those are the ones that are the most important and frequently aren't tested.
There are a couple of articles you can show your GP to suggest that you are undermedicated and use in support of requesting an increase in your Levo:
Thyroxine Replacement Therapy in Primary Hypothyroidism
TSH Level .................. This Indicates
0.2 - 2.0 miu/L .......... Sufficient Replacement
> 2.0 miu/L ............ Likely under Replacement
also Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the magazine for doctors):
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).*"
*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3.
You can obtain a copy of the article by emailing Dionne at
tukadmin@thyroiduk.org
print it and highlight question 6 to show your doctor.
I also think it would be a good idea to do the test that SlowDragon mentioned - the full thyroid/vitamin panel to give you a full picture of your thyroid status and find out whether your nutrient levels are optimal.
As for posting pictures, just one is allowed and that has to be in the opening post of a thread. You can edit a post by clicking on MORE below your message and choose EDIT, make changes then click SUBMIT.
Also ....guidelines by weight might help push for dose increase
Even if we don’t start on full replacement dose, most people need to increase dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase in levothyroxine ) until on full replacement dose
For most people that’s somewhere between 100mcg and 200mcg levothyroxine.
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
What vitamin supplements are you currently taking?
Essential to get FULL thyroid and vitamin testing
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Do you have Hashimoto’s?
Ask GP to test vitamin levels and thyroid antibodies if not been tested yet
You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Thank you for the information, I didn’t get a print out of results it was about 3 weeks ago now & I went because I was concerned about how I was feeling.
I’m on Levo 50g brand name accord & take the dose at least 30 mins with water before eating, drinking & medications.
My meds are candesartan, cilitrapan, mebeverine, lanzaprasol, hrt, anti-histimines & paracetamol, I also have drops for dry eyes, peptic stuff for a hiatus hernia if needed & metronizadol.
I am not taking any other meds ...... or vitamins.
I think they tested vitamins a while back but can’t honestly remember?
I have only been on levo since about January this year, had a blood test about 6 weeks later as I felt rough again & they increased the dosage from 25 to 50g, seemed to be ok then the past month or so I’ve been flagging again?
I’ll have a look at the private testing, thank you for your advice.
I didn’t get a print out of results it was about 3 weeks ago now & I went because I was concerned about how I was feeling.
If you can get into the habit of asking for a print out of your results a few days after your test is done this will be a big help to you. With the help of members here you will learn how to interpret your results and then you will be able to monitor your health yourself. Doctors don't like us knowing so always ask the receptionist, and never accept verbal or hand written results, ask for a print out and that will contain the result plus the reference range (which is important as ranges vary from lab to lab). In the UK we are legally entitled to our results without charge or question. It doesn't matter when your tests were done, you can ask for all of them.
I’m on Levo 50g brand name accord & take the dose at least 30 mins with water before eating, drinking & medications.
50mcg is still only a starter dose. Regardless of what it says on the patient information leaflet, we always advise the following:
* Take your Levo on it's own, one hour before or two hours after food, with a glass of water only.
* Water only for one hour either side of taking Levo, coffee (and caffeine containing drinks) affect absorption.
* Any other medication or supplements should be 2 hours away from Levo, some need 4 hours.
I think they tested vitamins a while back but can’t honestly remember?
If you ask for a print out of all your tests, this will show.
I have only been on levo since about January this year, had a blood test about 6 weeks later as I felt rough again & they increased the dosage from 25 to 50g, seemed to be ok then the past month or so I’ve been flagging again?
So, started Levo in January, retested 6 weeks later so possibly mid-March. Now is the time to test again. Retesting needs to be done 6-8 weeks after any dose change. The fact that you are flagging again suggests you are not yet on your optimal dose and need an increase. I would suggest you ring and ask for the print out of your results and ask to be booked in for your next test and follow the advice that SlowDragon has given you above about how the test should be done.
So you need FULL thyroid and vitamin testing 6-8 weeks after each dose increase ....
Standard starter dose of levothyroxine is 50mcg (unless over 65 years old).
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many patients need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
Absolutely essential to get thyroid antibodies tested if not been tested yet
Bloating, IBS and poor gut function are common results of being hypothyroid, especially with autoimmune thyroid disease (hashimoto’s)
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.
Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten intolerance. Second most common is lactose intolerance
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find strictly gluten free diet reduces symptoms, sometimes significantly. Either due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test, or buy test online BEFORE trying strictly gluten free diet
Assuming test is negative you can immediately go on strictly gluten free diet
If coeliac test is positive you will need to remain on high gluten diet until endoscopy, with maximum 6 weeks wait, officially
Trying strictly gluten free diet for 3-6 months
If no noticeable improvement, reintroduce gluten and see if symptoms get worse
Standard starter dose of levothyroxine is 50mcg (unless over 65 years old).
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many patients need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
Correct thyroid testing requires several tests - which are rarely done in the NHS. Above SlowDragon has detailed the tests required for Thyroid - are those the ones you had. Time to take control methinks - are you able to have Private testing as detailed for you above in the reply from SlowDragon. Your PPI will lower the effectiveness nutrient absorption and lower B12 which can lead to cognitive decline and neurological issues ....How long have you been taking a PPI ?
Oh dear ! They are designed for a short course only as they prevent absorption of vital nutrients especially B12 which can lead to cognitive issues and neurological problems too ... Have you tried more natural solutions ? Often low acid when Hypo can have similar symptoms to high. We need good Acid levels to break down proteins.
I didn’t know that? All the people I know that take them are long term like me!
I’m going to be changing a few things now.
Thanks to you & everyone else who has given me such a lot of advice, reassurance & information.I feel better just thinking about being able to make some positive changes. Thank you all 🥰🥰🥰🥰
How long had you been on 50mcg....no point testing too soon...minimum of 6-8 weeks after each dose increase
Testing should always be as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
ALWAYS get copies of your results and ranges
Frequently they only test TSH which is completely inadequate
" I have only been on levo since about January this year, had a blood test about 6 weeks later as I felt rough again & they increased the dosage from 25 to 50g, seemed to be ok then the past month or so I’ve been flagging again? "
So you had a 2nd test at maybe end of Feb and dose went up to 50? You should ve automatically had another test mid April, but that is by-the-by now as you initiated a further test yourself around the end of April. The fact that you had to ask for a test in this early stage of your diagnosis is not reassuring tbh (NOT because there is something terrible going on with you, but because the Dr process seems to be broken. maybe understandable, right now?)
As others have said, you need to obtain your test results from 3 weeks ago. Its not complicated. you ring the receptionist, say you d like a printout of the results, and you'll be along in the afternoon to collect.
Personally, I dont think you need to look at private testing YET. You simply need the results of what's been done so far.
Once you have those results, post them on here, and some of the cleverer members will happily interpret them for you. Then you ll hopefully have a better idea of how to proceed.
The thing about PPIs is that they are meant to be used to cut stomach acid levels temporarily in people with problems like ulcers that are being treated, or who need treatment to eliminate helicobacter pylori.
But for many people they are prescribed when they develop indigestion or heart burn and the doctor tells the patient they have too high a level of stomach acid and need to reduce it.
This is nonsense in most cases and doctors don't ever test or measure stomach acid levels. Indigestion and heart burn are usually caused by LOW stomach acid, and the best treatment is usually to increase acid in the stomach.
People can do this in various ways, but the most common are to use either apple cider vinegar (ACV) + water or betaine + pepsin capsules. Betaine hydrochloride is an artificial version of stomach acid which can be bought without prescription from supplement sites on the internet. Few places sell them on the high street.
The problem with PPIs is that most people find it extremely hard to come off them because the stomach starts producing massive amounts more stomach acid than it ever did before the patient started taking PPIs. This over-production is temporary, but can make life miserable for a few weeks.
If you want to try ACV before trying betaine HCL + Pepsin...
Start with half a teaspoon ACV in a glass of water. Start sipping the ACV + water just before a meal, and keep sipping it throughout the meal.
At the end of the meal rinse your mouth out with plain water. An hour after taking the ACV and water you can clean your teeth. Vinegar softens tooth enamel. By delaying cleaning your teeth it allows your tooth enamel time to harden up again.
If half a teaspoon ACV in water doesn't help, try a teaspoon, then add another half teaspoon, then another up to a maximum of 2 tablespoons in water.
If it is going to work you will notice a reduction in indigestion and heartburn.
If you want to understand why low stomach acid leads to heartburn and indigestion, then these articles are worth the effort of reading them :
You could struggle to raise acid levels in your stomach if you have a hiatus hernia. Do you have a hiatus hernia? Has it been confirmed with an endoscopy?
If you just can't tolerate extra acid then you may just have to live with the PPIs, sadly.
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7 kg gain in 4 days. Serious facial swelling!! Help? Fat? Water?
Experience going OFF thyroid meds?
Treating with NDT, seem to be going backwards.
Is it normal to feel this awful?
