My experience, from diagnosis and then living with hypothyroidism hasnt been an easy road till now, I wonder if my situation is relatable and whether a pointer or two could lead to improved health.
Im now 39 and was finally diagnosed in June 2019, after much flapping around at my GP.
My mother and elder brother were both diagnosed with hypothyroidism in their mid 30's, probably some what inevitable that I followed suit. Prior to my diagnosis I had quit smoking, caught a cold and a period of time there after, I was bed bound, my body all over had swelled, friends that I'd worked with for 15 years, didnt recognise me despite being stood next to them.. (further detailed within bio).
Upon diagnosis, I was placed on 75mg Levo and my world restarted almost overnight, tiredness and brainfog lifted almost overnight, I felt amazing thought process was quick, I truly felt awake and alive, I doubt I couldve felt any better. From sleeping constantly I couldn't even take a nap, I felt on it. How i long for this feeling..
Sadly this feeling didnt last, queue regular bloodtests, eventually I was placed on 125mg and have fluctuated between 100 and 125mg ever since. Currently on 125mg Levo.
I have tried to listen to my body, maybe even for the first time. Watch for little signs that hint of something that requires tweaking. My tells are hair loss, not only my head but my legs, ankles up the outside of my leg, normally right side. Moderate swelling around my ankles, fatigue and irritable being the other headlines.
When I've seen these changes, I have sometimes, possibly wrongly, tweaked my own medication levels.. experience taught me that when I've engaged the GP, my scrpt has been altered then it was a drama having 25mg's added back on when I've felt my levels need to increase. If i felt the medication was right surely i wouldnt have felt the need to address levels.
At times, making the adjustment of 25mg up or down arrived with a short period of feeling good, hair grew back, pins and needles abated. On one occasion of dropping down medication the chaps woke up long enough that my partner fell pregnant.
First series of blood tests have shown up I was Vit D deficient which seems to have sorted itself (although fishing mad. Many hours spent outdoors)
Last two tests have shown up cholesterol, the last being 'very high'. I have felt as though the fog has come back down and with it my undecisiveness has gotten out of control, whereas otherwise I'm normally head strong and decisive, currently feel low and find it really hard to motivate, get up and go has got up and jumped out of the window. I gather the thyroxine levels are what they should be as ive not been directed to adjust since 2019.
My anxiety has gotten progressively worse and I've in the last 10 months been prescribed Propranolol, that seems to work but to me it feels like a sticking plaster. Masks the symptoms but the underlying niggles are still there... Loose BM's are a nearly daily occurrence, piles also feature on occasion..(not disclosed to the Dr, much better to do it online!! Ha)
My brothers symptoms are pretty much if not entirely matched or mirrored in my own. Hes been placed on statins and its something I'm loathed to end up on.
Back in February this year, weighing high 90's kg 5'10 ish, I started attending a gym to feel better, improve fitness and general health and wellbeing. My attendance averages 5 days a week, I aim for 45 minutes but often run to 90 minutes, mostly weight training though cardio features daily between 10 to 15 minutes at the start of any workout. My food intake averages 2000 calories and now I'm monitoring my Saturated fat intake most days im below 30g. As of 5/10 my weight is peaking at an all time high of 105kg. I keep telling myself that I need to stick with doing the right things but its difficult when the goals never appear any closer.
Weight gain proving difficult / impossible to shead, brain fog, cholesterol, anxiety, loose BM's, piles.. I believe each are a knock on from hypothyroidism. I've lost all faith in my GP practice despite raising a number of econsults essentially stating I'm not feeling as good as I have previously, a blood test is followed by a text, to follow up I have to start the econsult process over.. I tell myself and others, we're all in the same boat and im not more important than anyone else.. but my goodness its so bloody annoying.
Can anyone else relate to my experience?
Is it an issue with medication?
Is it all in my head or could it be something else?
If you've made it this far, you deserve a medal, truly. Any replies will be most gratefully received.
With thanks and regards,
Steve
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Hoopy83
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Yes…..many of your experiences you will see repeatedly on many other members bio’s and posts
The first step is to get FULL thyroid and vitamin testing done. If GP won’t, then use private testing
Also….going to the gym and intense exercise will be using up your Ft3
Propranolol slows uptake and conversion rate of levothyroxine (Ft4) to active hormone (Ft3)
But you must NOT stop propranolol suddenly
How much propranolol are you currently taking. It has to be weened off incredibly slowly (I was stuck on propranolol almost 20 years, more on my profile)
First thing is, do you have any recent blood test results? if not will need to get hold of copies.
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
a great response that I will only add my 2 pennies to - exercise and Levo on their own made remarkedly little difference to my present improvements.
Things turned around when I transformed my diet, supplements and getting a really good nights sleep each night. In fact I have scaled back on hard exercise to more gentle walking.
It is a lot of hard work to get the balance of all these right but boy is the end result worth it
If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.
Anxiety is an extremely common hypothyroid symptom …..and suggests you are not on high enough dose levothyroxine and/or poor conversion
Request GP do coeliac blood test if not already been done
Hashimoto's 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. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct 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 first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Hello SlowDragon & Danielj1 .. thank you both so much for taking the time to reply this morning, especially for all the invaluable detail above SlowDragon . I had a read through your bio, so sorry that youve had it as bad as you have. Thank you for sharing your experience.
Ive just accessed my NHS app and managed to extract the results from my most recent blood test. Apologies I could not copy and paste instead grabbed screenshots, I will post them after this post as it would appear i can only attach one at a time.
I note the following seem to be missing T3, TPO & TG, along with folate, Ferritin, B12 and coeliac, I will get another econsult raised straight after this to request those tests.
My blood tests are generally in the afternoon, I've never had a blood test pre 9am, recalling the most recent conversation with the GP receptionist, appointments before 10am are reserved for individuals that are fasting..
Quick observation while I was there, clicked into health conditions which list both hypothyroidism and anxiety and depressive disorder as significant but when I raised my last econsult in August for tiredness, expressively linking to the thyroid issue in my econsult, (that led on to the last round of test results) this was listed as minor.. seems strange to me.
Really interesting note regarding use of Propranolol and Statins. My daily intake is 40mg taken in the morning between 30 to 60 minutes after Levo that are taken with water on an empty stomach. I used to wait an hour but then i notice one day the box directions for use and started, on occasion, taken sooner.. I will revise this back to an hour.
Directions for use on Propranolol are to take in the morning, Levo directs use at least 30 minutes before breakfast, caffine containing drinks or other meds.
Interesting about the Gluten free diet, i will also look into this later today.
I will go through the links in your post this evening, blood test results..
5) meanwhile get folate, ferritin and B12 levels tested
6) Thyroid antibodies. NHS only ever tests once …..usually at diagnosis. Look through old test results
If TPO antibodies are not over range, NHS doesn’t test TG antibodies.
Significant minority of Hashimoto’s patients only have high TG antibodies.
If your TPO antibodies are low you will need to test both TPO and TG antibodies privately
7) ever had ultrasound scan of thyroid?
8) You need to move levothyroxine dose as far away as possible from propranolol
Suggest you switch to taking levothyroxine at bedtime….must be on empty stomach, ideally nothing apart from water for at least 2 hours before and then nothing apart from water for at least an hour after
Many people find it more convenient at bedtime, possibly more effective
9) GFR result. Is there a range on result.
10) don’t gut gluten out until had coeliac blood test. If test is positive you need to remain on high gluten rich diet until endoscopy.
Thanks again for all the information above, I've learnt more today than I have in the past 3 years. Thank you.
For ease of reply, ill reply to the above message in turn.
1) I've just purchased the advanced thyroid test from medicare, thanks for your link, which I believe tticks all the requirements bar coeliac that I will go through with my gp, ill post up the medicare results as they come in, thank you.
2) Propranolol- all noted. Over what duration would you recommend reducing dosage?
4) Vit D. I'm not taking any at the moment, when I was informed my Vit D was low I went on to take H&B Vit D3 25ug.. around the same time I took selenium 200pg from H&B again. I recall being advised by the GP to stop taking them, I dont recall the reasoning behind it. Should I start taking both? Are they anygood or should i be looking toward the link you previously sent? Do i take them straight away or wait until after the pending blood test?
6) Checked through the app for throid antibody results and I couldnt find one had ever been done.. must check whether medicare include TPO and TG antibody testing..
7) never had a thyroid ultrasound
8) makes perfect sense, i will move the levo intake to the evening as suggested, noting i should leave at least 24 hours between dosage and blood test.
9) GFR result = estimated (CKD-EPI) : 56 mL/min/1.731.73m1.73m2
Again, a huge thanks to you for your time and imparting all this information, I shall go through the links you have provided and and get some supplements ordered.
1) It’s Medichecks (not Medicare) ….and yes includes both TPO and TG thyroid antibodies testing
2) don’t even think about reducing propranolol yet
4) H&B own make are cheap for a reason. Recommend Better You mouth spray as it’s absorbed in mouth, not gut. Therefore only needs to be an hour away from levothyroxine….whereas vitamin D tablets should be four hours away.
your phosphate is below range and calcium high in range. Have you had parathyroid levels PTH checked? My results were similar and long story short I was diagnosed with primary hyperparathyroidism PHPT which is completely different to thyroid issues. You would need a blood test of PTH Ca and Vit d all from same draw. I was long term undiagnosed and have osteopaenia as a result, i kept being told your thyroid is fine, I was only diagnosed because I queried my low phosphate with Endo. Doing this from phone will post a link to a great Facebook group when on computer.
right you are SlowDragon , wasn't medicare the universal healthcare initiative? What a doughnut. Did say cognitive function isn't what it usually is..
This last week has seen little progress but it all seems to be a huge slog to get anywhere. Medichecks blood test results returned bar two that have failed, since booked a clinic visit in the hope of seeing no repeat fails.
Managed to speak with my GP yesterday, spoke about the thyroid test that was suggested earlier in this thread upon positive testing of Hypothyroidism.. according to my GP its not offered due to government guidelines?! I wonder how much treatment varies according to location/nhs trust? Regards use of Propranolol and Statins, she was not aware these shouldn't be prescribed to individuals with autoimmune disorders..
anyhow, upshot of that conversation is that the GP made out a private referral, I'm hoping it makes sense to get the T3 result back prior to launching attempts to progress that further, again, more research will need to go into private heathcare insurance, could I get insurance at a reasonable rate for an diagnosed issue!?
Unsurprisingly your high thyroid antibodies confirms autoimmune thyroid disease also called Hashimoto’s
Request GP do coeliac blood test BEFORE Trialing strictly gluten free diet
Ferritin is good
Folate ok
B12 on low side
lolajone has pointed out your calcium is very slightly high
Calcium levels are usually tightly controlled
What vitamin supplements are you now taking
Have you been taking vitamin D, if yes how much
Higher Vitamin D can increase calcium levels
Request GP test calcium, vitamin D and parathyroid levels together…..usually has to be done at hospital pathology….Parathyroid test has to be processed immediately
Mind you …..on propranolol parathyroid levels will be reduced….so perhaps that might explain high calcium?
Hi SlowDragon , thank you for getting back to me.
Vit D = Yes, I've been taking betteryoui D3000 +K2, X2 in the morning. I've also purchased the magnesium you advised above, following your advise I will start taking these in about 2 weeks ensuring a 3 week period between starting new Supplements.
T3 & Vit D retest. Am hopeful the missed results will be available to view next week, should I leave 24 hour gap in medication intake as I did with the previous test?
Do you think the low B12 is something that should be addressed?
Thank you so much for this and for bearing with me! Now that you have I do recall you saying as much above. I will get onto medichecks to confirm this is part of the retest.
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)
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 methyl folate supplement and continue separate B12
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months.
once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
4 months ago I posted about how generally rubbish I had been feeling for sometime.. it was the response here and reading through other threads that helped me to understand what's happening to me isn't just 'in my head' or a sign of getting older, but is something mirrored by so many other Hypthyroid sufferers that are inadequately medicated... so for that, I'm so thankful for this board and its members.
My Gp was and continues to be truly useless, I won't go into that detail as there would be no end to that rant! Due to the inactivity of my GP to my concerns surrounding my health and management of my condition, I pursued a route into the world of private healthcare.
My GP had already told me that NHS referrals were no longer a quick process and that policy changes put more onus onto the GP to provide solutions to health complaints (go figure!?).. apparently, too many referrals taking place overwhelming hospitals and increasing waiting times etc.. just simply swotted away akin ??!
I had assumed my journey through the private loop would be far quicker than the NHS alternative, possibly.. !? Correction, most probably so, however, that's not to say that it's been a quick as I thought it would be..
A quick Google search turned up a specialist Endocrinologist consultant - Portsmouth.
The initial assessment looked at history, active symptoms etc, I had said that after many months of being misdiagnosed that I recalled feeling great on Levo 75mg dose.. (put into context, prior to my diagnosis I was physically sick every morning, chronic fatigue did its best to keep me bed bound.. even brushing my teeth would set in cramp throughout my body.. going from no treatment to some, anything would've been an improvement..)
For the Endo, revisiting that 75mg from 125mg was worth a look?? So stage reductions, 100mg, 75mg..
Second appointment saw an increase back to 100mg.. just had my third appointment, and yes you probably guessed it.. back to 125mg! (Around the same bouy for the last 3 years and seems to be ongoing..)
NHS hospital blood tests in-between appointments 2, 3 and 4. Medichecks thyroid results provided prior to the first appointment. Tested coeliac and testosterone levels during test 2, however, this test didn't go according to plan as though T3 & T4 levels had been requested on the blood form.. the hospital failed to return those results so the assessment to increase relied upon TSH result!
My patience wore thin during the third appointment given that 'we' are retracing what I had done for the past 3 years.. so rather blundly enquired as to why medical history had by all appearances been swept aside? Surely historical blood tests on record, assessments can be made from that data to push on rather than revisit?!
The feedback wasn't quite what I was after but a clear way ahead has been given.. short of a miracle, my forth appointment will see me transferred into NHS for ongoing T3 treatment. I assume by trial but that wasn't briefed.
According to statistics? 98% of Hypothyroid patients respond to Levo treatment.. suggesting only 2% of require T3 intervention.. I'm one of three in my family to all suffer from hypothyroidism, none of us feel OK on Levo.. I do wonder how accurate that figure is..?
My symptoms remain unchanged in the last 4 months but am hopeful that change is just round the corner and it won't be long till I find my medication sweet spot, keeping up with the vit D and magnesium but I can't say I have felt any noticeable differences.. perhaps when the fatigue lifts the benefits will be evident.
Prior to christmas, I saw a number of posts talking about 2 pending book (Thyroid) releases, I went along with what appeared to be the popular choice.. The underactive thyroid 'do it yourself because your doctor won't', I found the opening pages particularly helpful in identifying active symptoms against those associated with Hypothyroidism. I asked my consultant during my last appointment about the PK diet that mentioned heavily in the book .. direct quotes 'I have devoted whole books to paleo-ketogenic diet', 'the PK diet is the single most important intervention' and my fav 'if you are not prepared to go PK, then please stop reading now and pass the book onto someone who is'.. my consultant replied to this question saying that there is no clear evidence or studies into PK diet that confirm benefits / improved symptoms...
Q- Have many tried the PK? Is it another placebo or is there actual positives taken from going down the PK route?
Blood ranges, normal range..
Another standout point (for me) in the book is that it doesn't really get into the whys and how's for male sufferers, a little on child suffers 'cretins' but focused on female sufferers.. rightly so given its more prevalent in females.. But.. raised questions for me in how these blood ranges are arrived at? Does the 'normal' translate seamlessly between female and male?
Please feel free to give me a kicking if this is a proper noddy question, I genuinely dont know and hope someone can give me a steer.. Considering treatments and dosages, should / are both sexes treated like for like (same level of dosage based against same blood levels .eg. ) or should there be increase / decrease according to additional factors... sex, age, activity level, size etc? Hoping that makes sense..
Thanks for taking the time in reading and apologies for being text heavy, and thanks inadvance for any replies.
Hi steve , i think your updates are being missed because they are a reply "to yourself" as it were. if you replied under a specific persons reply on this post then they would get a notification , but other wise people often assume a new reply they see on an 'old' post is for someone else and don't read it . because the forum is so busy .
Writing a 'new post' will attract more attention . and people can always refer back to this one via your profile page to see your 'previous' .
re . the women / ranges /research etc ... yes, the little research there is on thyroid levels that carefully distinguishes sex /age does find differences ...but this doesn't necessarily mean the tables/ ranges are turned in favour of the females with thyroid problems .In fact it is often the opposite scenario.
We are often astonished to find that the majority of "healthy controls" used for thyroid research studies were actually very young men , (for a disease that predominantly affects middle aged women) , and even more ludicrous , despite looking very hard through the research ...we can only find results for 2 ! women where the phase of menstrual cycle has been noted in relation to their TSH level and the casual observation that it 'may have a very significant effect' (they found this by complete accident , not as the main purpose of the study )... done several yrs ago.. nobody seems to have bothered looking since .....
sometimes you really do have to wonder what the endocrinology profession are using for brains ) or why they are involved in treating thyroid conditions when they seem to virtually no curiosity about it.
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