further thyroid Blood results : hoping someone... - Thyroid UK

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further thyroid Blood results

Void1234 profile image
64 Replies

hoping someone can help, as utterly feel a shaking mess, ive been having ongoing panic attacks , jitters etc, several visits to a&e and blood panels done. Supplementing vits magnesium , Vit D and selenium. As mentioned on a previous thread ive a goiter and hashi’s and its swelling alot most nights and lots of face swelling in morning when wake up and eyes swelling. Im due an ultrasound next week and CT scan , the GP said these bloods below are perfect , done at 9am on 17th august and im on right dose of levo at 75mgs, bloods FT3 5.3 pmoI ( range 3.1-6.8) / FT4 17.0 pmoI ( range 12-22 pmoI ) TSH 1.7 mu/L ( range 0.27- 4.2 Mu/L ) however , I don’t feel it . Appreciate any steer……

folks , have just added some photos to show you the thyroid swelling having presently and how uncomfortable it is - especially at night… hopefully have added this right …

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Void1234
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greygoose profile image
greygoose

FT3 5.3 pmoI ( range 3.1-6.8) 59.46%FT4 17.0 pmoI ( range 12-22 pmoI ) 50.00%

TSH 1.7 mu/L ( range 0.27- 4.2 Mu/L )

How would your GP know your labs are perfect? He doesn't live in your body. It's not about the numbers, it's about how you feel. And, even the numbers aren't that great. Your TSH is a bit high for someone on thyroid hormone replacement. And, your Frees are around the low-side. Most hypos need them higher than that, about 75% through the range. I don't think he would consider them that perfect if they were his results!

Myself, I would definitely want an increase in dose.

Void1234 profile image
Void1234 in reply togreygoose

Thanks Grey Goose as i cant see my endo until november ! Im going to consult a private GP to get steer on dosage. Strangely in my last bloods my tsh was sitting at 3.8 its jumping around abit.

Jaydee1507 profile image
Jaydee1507Administrator

I saw in your previous post you replied saying you take Barocca. I looked it up the other day for someone else. It doesn't contain the best form of vitamins I'm afraid. It contains Folic acid which some people are unable to use. Can recommend switching that out for a good B complex containing 5 - MTHF methylofate which doesn't require conversion by your body to use. Thorne Basic B is a good one people recommend here.

Void1234 profile image
Void1234 in reply toJaydee1507

Thanks Jaydee, i actually stopped using the berroca based on the advice , given on the original posts. I meant to add my GP has put me on beta blockers … to try to put a sticker on the symptoms of whatever is going on,🙄 i took photographs also to show GP how much my goiter had swollen - with little reaction from Gp!

Jaydee1507 profile image
Jaydee1507Administrator in reply toVoid1234

I see, thanks for the explanation. I didn't read all the replies. Good move though. What have you replaced it with?

Beta blockers totally not recommended as I believe reduces T4 to T3 conversion. No doubt your GP has no idea of this though.

Have you tried a gluten and dairy free diet? Helps some and may reduce your swelling.

Void1234 profile image
Void1234 in reply toJaydee1507

Hi Jaydee, thanks for response, yes Ive started full Gluten Free and dairy free. I’ve stopped berroca and taking a Vitamin B complex supplement, magnesium and selenium and garlic supplement.. i’m not happy about beta blockers at all its just a quick fix for GP . They have however helped with the terrible anxiety and shakes etc.. i was also diagnosed with anisometropia by optician around the time symptoms started as was having light sensitivity and blurred vision- just to add to list 🫣

Jaydee1507 profile image
Jaydee1507Administrator in reply toVoid1234

Just as an aside. I think if I'm right you said you were on Teva brand Levo? If you can find another lactose free tablet or persuade your GP to change you to liquid Levo you ight see an improvement. Teva brand tablets are renown for not suiting a lot of people.

Void1234 profile image
Void1234 in reply toJaydee1507

Thanks Jaydee , will ask GP , i did read the Teva was not great.

SlowDragon profile image
SlowDragonAdministrator in reply toVoid1234

Which beta blocker and what dose?

Void1234 profile image
Void1234 in reply toSlowDragon

Hi Slow Dragon, Propanol 10mg three times per day ,

SlowDragon profile image
SlowDragonAdministrator in reply toVoid1234

Propranolol significantly reduces uptake and conversion of Ft4 to Ft3

pubmed.ncbi.nlm.nih.gov/168...

labtestsonline.org.uk/tests...

Drugs that may decrease PTH include cimetidine and propranolol.

rejuvagencenter.com/hypothy...

How long have you been on 3 x 10mg propranolol

You can’t stop propranolol suddenly, especially on levothyroxine. When weening off has to be done VERY SLOWLY.

I was stuck on 4 x propranolol almost 20 years…more on my profile

Approx how much do you weigh in kilo

75mcg levothyroxine is only one step up from starter dose

Guidelines on dose levothyroxine by weight is approx 1.6mcg levothyroxine per kilo of your weight per day

Request 25mcg dose increase in levothyroxine…..perhaps only increase to 75mcg and 100mcg alternate days for 6-8 weeks….before increasing to 100mcg daily

Void1234 profile image
Void1234 in reply toSlowDragon

Hi slow dragon, im 76Kg weight acutally went up in weight ! The propanol i am trying not to take full dosage as to be honest , i have a disabled child and i can’t really function taking the full amount to do all his care. Which is quite full on. My GP wont help me with increase but private GP will. You dont think slow dragon il start to show signs of over medicating … i was worried just that might happen.

SlowDragon profile image
SlowDragonAdministrator in reply toVoid1234

76kg x 1.6mcg levothyroxine = 121mcg levothyroxine per day as the likely daily dose required

You may need propranolol to help tolerate levothyroxine dose increase

If been left very under medicated, it can be difficult/impossible to increase dose levothyroxine

Increase SLOWLY…..initially 75mcg and 100mcg on alternate days….

Can be helpful to split dose levothyroxine into two smaller doses too

Get weekly pill dispenser for levothyroxine, especially if taking different dose on different days…or splitting dose

It makes it MUCH easier to keep track and not miss a dose

Essential to regularly retest, folate, ferritin and B12 at least once a year

Test vitamin D twice a year

How much vitamin D are you currently taking

When was vitamin D last tested

NHS Guidelines on dose vitamin D required

ouh.nhs.uk/osteoporosis/use...

GP will often only prescribe to bring vitamin D levels to 50nmol. Some CCG areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better

pubmed.ncbi.nlm.nih.gov/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly via NHS private testing service when supplementing

vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.

There’s a version made that also contains vitamin K2 Mk7.

One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

Another member recommended this one recently

Vitamin D with k2

amazon.co.uk/Strength-Subli...

It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average

Vitamin D and thyroid disease

grassrootshealth.net/blog/t...

Vitamin D may prevent Autoimmune disease

newscientist.com/article/23...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Great article by Dr Malcolm Kendrick on magnesium

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

Void1234 profile image
Void1234 in reply toSlowDragon

Thank you SlowDragon for all advice, the better you range us great and I’ll investigate further the testing. Do you have any recommendations on selenium brands that are good? I will get that tested also . The levo will start to increase just abit nervous🙈

SlowDragon profile image
SlowDragonAdministrator in reply toVoid1234

Which vitamin B complex

Remember to stop taking this a week before blood test.

Consider taking a separate methyl folate in the week you stop B complex

Magnesium, best taken in afternoon or evening and at least 4 hours away from levothyroxine

Void1234 profile image
Void1234 in reply toSlowDragon

Hi Slow Dragon, im taking the floradex supplement if vitamin D and Magnesium. Thats a good note around the bloods, will ensure i do that

SlowDragon profile image
SlowDragonAdministrator in reply toVoid1234

Test vitamin D, see what level is

Suggest you get a decent vitamin D and separate magnesium supplement

Better you vitamin D mount spray avoids poor gut function

Magnesium supplement best taken afternoon or evening (minimum 4 hours away from levothyroxine)

Brightness14 profile image
Brightness14 in reply toVoid1234

What reason did you GP give you for put you on Beta Blockers?

Void1234 profile image
Void1234 in reply toBrightness14

Hi Brightness, to slow heart rate and palpitations and help panic attacks.

Brightness14 profile image
Brightness14 in reply toVoid1234

I take hawthorn capsules which lower the heart rate and organic chamomile tea for a calm mind.I live in France but in Germany even the GP's prescribe Hawthorn which has been used for over 100 years. It's good for the kidney's too and is natural. Also Grapefruit for the heart as well. It depends on whether or not you go down the chemical route or not.

BlueKeith profile image
BlueKeith

How long you been on levothyroxine?

Void1234 profile image
Void1234 in reply toBlueKeith

Hi Stubbo, ive been on levo 11 years, first 4 years 50 mcg then increased to 75mcg after TSH was 4.1,

SlowDragon profile image
SlowDragonAdministrator in reply toVoid1234

Good grief, you have been massively under medicated for years

Void1234 profile image
Void1234 in reply toSlowDragon

Slow dragon is it based on weight also the dosage? i didnt know that. I think the GPs initially just wanted to fix goiter and dosed me to 50 mcg, when my thyroid swells consistently thats when i know things are off…

SlowDragon profile image
SlowDragonAdministrator in reply toVoid1234

Yes….levothyroxine doesn’t top up failing thyroid, it replaces it

As dose of levothyroxine is increased, TSH reduces and shuts down your own thyroid output

If not taking enough, you remain hypothyroid, especially after busy days

Typically when adequately treated, TSH will be below one …..often below range

Essential all four vitamins are optimal

ALWAYS test thyroid levels early morning, and last dose levothyroxine 24 hours before test

Void1234 profile image
Void1234 in reply toSlowDragon

ThanksSlow Dragon, a nurse that helps my child is on thyroxine and was surprised my dose was so low as shes on 100mcg and said usually 100 is the starter dosage. I do find at night my symptoms are alot worse, swelling, even swallowing seems hard and i also find this strange shortness of breath. Like air hunger when lie down,

SlowDragon profile image
SlowDragonAdministrator in reply toVoid1234

strange shortness of breath. Like air hunger when lie down,

…..classic hypothyroid symptoms

Get folate, ferritin and B12 levels tested

Increase levothyroxine dose to 75mcg and 100mcg alternate days….wait 6 weeks

Then either retest or increase dose to 100mcg daily

Then retest after 6-8 weeks on 100mcg everyday

Get same brand levothyroxine at each prescription

Always test thyroid levels early morning, ideally just before 9am and last dose levothyroxine 24 hours before test

Many members find it better to split levothyroxine into 2 smaller doses per day

Void1234 profile image
Void1234 in reply toSlowDragon

Thank you for advice , much appreciated

BlueKeith profile image
BlueKeith in reply toVoid1234

Ah right. I was thinking you had just started taking levothyroxine because I suffered with the jitters when I first started taking it and lasted months. I've always thought I'm under medicated at least slightly at 75mcg and have been on this dose over a year. My doctor is very against increasing as he says it is worse to be over medicated than under. Hope you find a solution to your problem and would be interested to hear how you got on.

Void1234 profile image
Void1234 in reply toBlueKeith

Yes Stubbo, im abit nervous about increasing dosage but Slow Dragon and Grey Goose have some very good advice. I will keep you posted how i get on

BlueKeith profile image
BlueKeith in reply toVoid1234

I think the GP's should at least try us on a higher dose and see if we feel better tbh.

Void1234 profile image
Void1234 in reply toBlueKeith

Yes agree, i think alot of them just look at TSH and state your in normal range so should be ok, its in your head… And you then show them a swollen thyroid and they go off looking for other reasons… 🙄

How much t3 are you on and how fast did you increase your dose?

Void1234 profile image
Void1234 in reply to

Hi relentlesssearch, I’m in NI and T3 never offered infact endo gives u the hard stare and closes door on you if you happen to raise it and enquire! I visited Endo surgeon last week and she said bloods perfectly fine too , We dont do T3 and that was that🙈 my query is they want to remove thyroid but , if they wont work with you on dosage adjustments and label you as fine. How does that work when you have no thyroid at all and need to function!

Litatamon profile image
Litatamon in reply toVoid1234

Hi,

One way to check if the goitre, or some of the nodules, has become an issue is to raise your arms over your head & slowly drop your chin down to your chest.

Try to talk (and for some breathe).

Hope you get everything sorted soon.

Void1234 profile image
Void1234 in reply toLitatamon

Hi Litatamon, just tried that and a tad uncomfortable but ok.

RachelP03 profile image
RachelP03

Sex hormones and cortisol could also be at play here!

Void1234 profile image
Void1234 in reply toRachelP03

Hi Rachel , My Cortisol they actually checked at hospital and said was normal , i did query was a premenopausal and was it bouncing things about , however recent hormone test was normal.

CoeliacMum1 profile image
CoeliacMum1

Back in 2020 my last back issue problems, I started with jittery feeling it was my out of control blood sugars causing panic/anxiety like problems although I will add there was a degree of anxiety and frustration as not being listened to by GP at this point regarding my thyroid back problems and wanting it fully investigating. I think due to covid and having health insurance it was easier for them thus time to shove my problems elsewhere… so covid did me a favour.

I’d asked for years to be referred but told thyroid ok… so my point is how are your blood sugars?Big driver in other hormones too, I’ve found , my blood sugar not quite pre diabetic but when it creeps up for a length of time I got this sensation, my BP is good.

Might be something to check 🤷🏻‍♀️

Void1234 profile image
Void1234 in reply toCoeliacMum1

Hi Coelicmum, so interesting my son has blood sugar issues so ive been testing my bloods and im usually in morning before food around 5.0 then afternoon 6.0 and yes, ive been watching those and my diet lots. Ive got to stage i get up in morning have panic attack , drive to supermarket panic attack at checkout , hairs falling out , face continually swollen …. I’m even nervous going into work sitting shaking at desk. The beta blockers help the heart palpiations but the jitters and dizzyness still there at time. Thyroidswells up as soon as these attacks happen, so i know its associated. Its horrible….my selenium i use is holland and barret 200mg and i honestly find it not that effective at all anymore to help me. I have had lots of stress over last year and the last time i had this happen was when my son had surgery at great ormond street and was in intensive care. My thyroid said thats enough and then had to have dosage increase. GP’s dont want to listen i feel your pain, before these issues i cycled 20 miles a day, swam 3 times week and horse rode also.

SlowDragon profile image
SlowDragonAdministrator in reply toVoid1234

Panic attacks extremely common hypothyroid symptom an£ should improve as dose levothyroxine is increased and vitamin levels improve to optimal

Come back with new post once you get full thyroid and vitamin testing results after increasing dose levothyroxine

Test vitamin D now

Suggest you test selenium levels

medichecks.com/products/sel...

You may be taking too much

Selenium not a magic bullet

Might only need to take once a week

CoeliacMum1 profile image
CoeliacMum1

Look up high selenium levels.

Nervousness is common side effect as is hair loss.

Is there anyway you can test these selenium levels?

I only have an annual Hba1c for blood sugar just to keep an eye on things…I decided to watch the higher glycemic foods for more control, being coeliac if you eat lots of gf processed foods, which when first diagnosed I did, and hence this one off high test… as these gf processed foods are made with white rice flour, potato starch and maize and bunch of chemicals to mask everything to taste somewhat normal that’s most likely the problem, since hardly eating these foods my blood sugar naturally lowered so I keep away from free from aisle now.

I try to eat naturally gluten free food now.

Void1234 profile image
Void1234 in reply toCoeliacMum1

Thank you Coeliac mum for advice, im not sure how you test selenium actually? I can reduce to 100 mg and see how that goes

CoeliacMum1 profile image
CoeliacMum1 in reply toVoid1234

I would see your GP before doing anything if they prescribed it.Do they know you’re on supplements?

I’m not sure regarding testing but if can’t get a physical appointment at least mention it on a phone appointment to them.

Void1234 profile image
Void1234 in reply toCoeliacMum1

Thanks Coelic mum , yes they know i am on supplements . I’ve had that many calls with them last few weeks , i think they have chalked me up as some type of hypochondriac… and tried to keep me quiet on betablockers. That's honestly how ive felt. They also offered me ant depressant seraline is it, which i wouldnt take.

CoeliacMum1 profile image
CoeliacMum1 in reply toVoid1234

Did they prescribe them?Are they monitoring selenium?

Ask them if ok to reduce.

If you’re taking them off your own back I wouldn’t of thought it would hurt to reduce but if some healthcare professionals are prescribing/monitoring you should go through correct channels.

I’m only aware of high levels causing what I mentioned.

Hope you get sorted pretty quickly it’s not nice at all… wish you well. 😊

Void1234 profile image
Void1234 in reply toCoeliacMum1

Hi Coelic mum, i started taking them myself GP is aware , i supplement

CoeliacMum1 profile image
CoeliacMum1 in reply toVoid1234

Like another member has mentioned definitely look if perimenopausal.

If your over 45 nice guidelines state you do not require blood testing to diagnose by the way!

Definitely anxiety is one of an exhaustive list of perimenopausal symptoms and that should be looked at before accepting any anxiety/antidepressants medication.

Look up

balance-menopause.com/

Go on Dr Louise Newsons Balance app and monitor your symptoms on there, then show GP, them.

There’s vast amount of information on her website on how to go about everything pre/peri/post menopause on there, and also if your GP doesn’t listen there’s bits to print out and give to your surgery.

They’re living in a cave if they’ve not at least one member of your surgery taken up her free training course.

Ask at receptionist if you could have appointment/phone call with someone who has specialist interest in menopause, if you want to go that route.

I’m on hrt it helped my joints too.

Void1234 profile image
Void1234 in reply toCoeliacMum1

Many thanks 👍

Realtiger profile image
Realtiger

Sorry to learn that you’re struggling - I see others have suggested there might be other avenues to consider and despite having had hormone levels tested (not a reliable indicator of fluctuations over time) increased anxiety is a very definite and much overlooked symptom of peri menopause. I was back and forth to my GP earlier this year insisting my Levo dose needed increasing (it probably still does based on Grey Goose’s earlier comment as TSH still over 2) with terrible brain fog, fatigue, and many other issues including, I now realise, increased anxiety. She recommended HRT without testing hormones. I was resistant at first as prefer to exhaust non pharmaceutical options but, after several months on HRT, I can safely say it has relieved many of the issues I was attributing to Hashis. I no longer wake up with a massive spike of cortisol and adrenaline first thing, am far less anxious, my energy is more sustained throughout the day, and the quality and duration of my sleep are vastly improved which also helps. I don’t know your age but would encourage you not to dismiss the possibility on the basis of hormone tests alone. 🌸

Void1234 profile image
Void1234 in reply toRealtiger

Thanks Real Tiger , your story sounds similar to mine, the adrenaline when you wake up i totally understand. I also had bleeding episodes last few months intermittent and was hesitant to try HRT as this was also recommended to me. Im 45 … my thyroid is just continually more swollen than normal and thats why i was thinking thyroid issue and based also Grey Goose’s advice which has been great 🙂 the hormone tests GP done said was fine also … they were quite literally throwing the HRT at me , when i made appointment to discuss.

Realtiger profile image
Realtiger

My understanding is that hormone testing is an unreliable determinant of whether HRT is indicated. You also don’t have to have stopped bleeding - I’m 51 and was still getting periods albeit they were becoming more erratic so I’m on oestrogen spray all the time and Utrogestan days 15-26. I also have endometriosis and it was getting to the point where I could not take enough iron to combat the anaemia from days of heavy bleeding every time. I know I’m sounding like a PR ad (I surprise myself as always considered HRT a last resort) but my younger sister, who has a long history of panic attacks and anxiety, also found things worsening and, after a year of debilitating vestibular migraines, is also finding relief on HRT.

I don’t doubt your thyroid is implicated in the picture somehow but it’s all interconnected. Until you’re experiencing the symptoms of fluctuating or decreasing hormone levels, it’s hard to appreciate how essential they are to your ability to function and sense of overall well-being. I’m still shocked at how much better I feel on the HRT!

Void1234 profile image
Void1234 in reply toRealtiger

Thank you Realtiger , its definitely something i will consider, Realtiger what dosage to they usually start you on?

Realtiger profile image
Realtiger in reply toVoid1234

Cyclical for me as was still getting periods. Transdermal oestrogen and body identical progesterone are the gold standard easily prescribed by NHS GP. I started on the spray (Lenzetto) as the gel was in short supply but there have been supply issues with both over the last six months. I started with one spray daily but now on two which is working better for me. Standard dose of Utrogestan on the cyclical course is 2x 100mg days 15-26.Dr Louise Newson’s Balance app and website offer a wealth of info and found these two episodes of Hit Play not Pause particularly instructive

podcasts.apple.com/gb/podca...

podcasts.apple.com/gb/podca...

Also recommend daily magnesium (malate /glycinate often tolerated better than citrate unless you welcome its laxative effects) as it has a calming effect on nervous system and works in opposition to calcium to help muscles relax. Active stress management also goes a long way - walking, mindfulness, breathing techniques, yoga, (guided) meditation, adult colouring books - whatever works best for you.

CoeliacMum1 profile image
CoeliacMum1 in reply toRealtiger

I’m 56 and still on cyclical hrt I take almost minimum oestrogel 1pump it’s the utrogestan (progesterone) for me that I noticed more calm and fab night’s sleep which help’s everything ultimately.

Void1234 profile image
Void1234

Thanks coeliac mum , 🙂 for advice really appreciate

KarmaMaya profile image
KarmaMaya

Hi, I’m just wondering if you have scheduled surgery to remove the goiter/thyroid? I had a thyroid lobectomy and after the surgery we found my thyroid meds were more potent and we had to reduce them. I have hashimotos too.

Void1234 profile image
Void1234 in reply toKarmaMaya

Hi , so they want to take all my thyroid out and meeting surgeon next week. As my goiter is quite big and can be seen easily, im worried about the surgery lots with it that big. An ENT also called me this morning and advised as its growing the main concern will be cancer…. And that didnt help my nerves this morning much …. Thats interesting the meds where more potent? I just hope they get my meds right…ive heard weight can be an issue once you have the surgery?

KarmaMaya profile image
KarmaMaya

I just had surgery 8 months ago. I was worried too. I had a biopsy before surgery that indicated a 40% chance of malignancy. The surgery went well. And recovery was relatively easy with very little pain. I just experienced some swelling that went away in 3 weeks. I feel great now. The nodule was a stage one - so completely gone with removal. I hope your surgery goes well. Try not to worry too much. Goiters are common. This surgery is done frequently. I am sending you empathy and positive healing thoughts. Let us know how it goes.

Void1234 profile image
Void1234 in reply toKarmaMaya

Hi Karma, replied to wrong link there! Did you have swelling of thyroid also. Thanks

Void1234 profile image
Void1234

Thanks Karma , did you have swelling of your thyroid also? Thanks

KarmaMaya profile image
KarmaMaya

I had a very large nodule that took up the entire left lobe. You could feel it but it didn’t bother me. My cousin and my friends mom both had very large goiters and surgery was the only option. They both did well with the surgery.

Void1234 profile image
Void1234 in reply toKarmaMaya

Thanks Karma, for response - yes mines taking up quite abit of neck and growing

Void1234 profile image
Void1234

Thanks Karma, for response - yes mines taking up quite abit of neck and growing

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