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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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.
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.
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.
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!
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 🫣
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.
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
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.
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🙈
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.
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…
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,
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.
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?
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!
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.
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.
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.
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.
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.
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.
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. 😊
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.
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.
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. 🌸
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.
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!
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
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.
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.
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.
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?
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.
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.
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