Hello all.... over the last year or so I have had worsening health.
I have been managing ok for a good few years my hypothyrodism / hashimoto's / menopause via Thyroid-S x 2 grains / strictly gluten free for over 5 years / Oestrogel x4 pumps/day.
Had reasonable energy levels, body composition, mood.
However in the last year or so I've been descending into - muscle weakness, poor sleep, low mood, poor memory/concentration, joint pain, dry eyes and mouth at night.
Latest symptom is sore swollen lips - I thought it was an allergic reaction to my teeth retainer, but on second thoughts I've had the retainer for years with no problem, and a cursory Google linked swollen lips with thyroid.
My latest test results (August 24) don't look too bad, though I was surprised to see my Vit D at the bottom of range, as I was over-range a year or two ago, so had quit supplements to bring that down. Seems it's plummeted in the last few months.
TSH: 0.125 mIU/L (0.27-4.2)
Free T3: 4.2 pmol/L (3.1-6.8)
Free T4: 9.1 pmol/L (12-22)
TGO: 22.2 kIU/L (0-115)
TPO: 78.9 kIU/L (0-34)
CRP HS: 0.759 mg/L (0-3)
Ferritin: 130 ug/L (30-264)
Folate Serum: 36.4 nmol/L (7-37.8)
VitB12 Active: 150 pmol/L (37.5-187.5)
VitD 59.6 nmol/L (50-250)
Any ideas?
When I was first diagnosed with low thyroid, I had low TSH, low T4 and low T3. Endo suspected pituatory tumor, but CT Scan showed all clear.
My GP friend mentioned parathyroid issues.... anyone got any insight on testing etc for that condition?
Thanks for reading, and any insight you may be able to shed.
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richar03
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Your FT3 is still very low. And your FT4 is under-range! Could just be that you're under-medicated.
In what way did your doctor friend mention parathyroids? Because they have nothing to do with the thyroid itself. They just have that name because of their position in the neck.
Hi greygoose, thanks for responding. I was a bit surprised to see my T4 under range, as it has consistently been low but in range.
I haven't tried increasing my Thyroid-S. I've been on 2 grains for over 5 years now.
My GP friend just mentioned parathyroid in passing.... I was listing the (long) range of symptoms. My hair's a frizzy mess, persistent skin issues, it goes on and on. She knows I have Hashimoto's but wondered if there might be something else going on.
I'd dismissed it until now, when I decided that I really can't tolerate feeling worse and worse, but I really don't know what to say to my own GP!
My GP recently tested my gonadotrophin levels to check I am absorbing my Oestrogel, and she said that all looks ok.
Well, you definitely need an increase in dose, I would say.
How did you do the test? Did you leave a gap of 8 to 12 hours between your last dose of Thyroid S and the blood draw.
Parathyroids regulate calcium. Have you had calcium tested? Although I doubt that would have anything to do with swollen lips.
Your vit D is low, though - much too low. So, your calcium will probably be low due to that. Your doctor should be prescribing loading doses of vit D and you should be taking it with vit K3-MK7 and magnesium.
Thanks greygoose... yes I tested per good protocol learned from this site first thing in the morning, previous dose 12hrs before.
I haven't had my calcium tested. GP has told me to take over the counter VitD, no more than 1000IU. I have been diligently getting moderate sun exposure all summer (well as much as you can in Cumbria!) so again was suprised to see such fast-falling, low levels in August.
I'll notch up my Thyroid-S, tackle the VitD (thank you for reminding about K).
See if that helps with lips/lethargy etc.
Will get the Calcium tested, though I don't have many of the common parathyroid issues so I was skeptical.
Not sure that's enough vit D, but I'm no expert. You could try writing a new post to ask about just that, then those that know can reply. And don't forget the magnesium! Most important.
NDT should be increased by quarter grains, not more than every two weeks.
Your doctor tested for your oestrogen levels. What was the result and range? Do you have them? Can you get them?
I'd not rule menopause out of the picture yet. All those things sound like not absorbing your gel very well. If you always apply it to the same part of your body, try moving it to a different place. Skin is skin. You can put it anywhere, not just on the inside of thighs and inner arms. Dr Louise Newson was talking about dosing the other day on Instagram. She talked about all sorts of things to do with dosing. You could track it down and watch. It was interesting. She also explained where the inner arms and legs instruction came from and why and how it is perfectly OK to apply it to any skin. Shins, shoulders, stomach, back, where ever. Sometimes we just need to let the skin we use every day desaturate. I use Lenzetto spray and I apply that to any part of my body I can manage whilst still keeping the dispenser upright (doesn' work tilted or upside down). Try on your stomach for a while and see if things feel any better in a week or so. Don't be afraid to try another pump. 4 pumps is the licensed dose because they have to pick a dose to get a license. It doesn't mean you can't have more. You need what you need.
Don't try adjusting your HRT and your thyroid together though. Pick one and go for it and try the other later when established with the first.
Hi FancyPants54.... thank you very much for taking the time to respond, with very interesting thoughts and suggestions.
I had two oestradiol tests taken:
5 Apr 24: 253 pmol/L
3 May 24: 331 pmol/L
The lab ranges are below. The GP just said 'normal', but I suppose looking at the upper ranges, I'm well below a pre-menopausal woman's oestradiol levels...... hmmmmmm!!! I do always rub it on the same spot on my legs/night and arms/morning, so I will try your advice of putting it elsewhere, and consider an extra pump, mindful of your comments around fiddling with both thyroid and hrt meds together. Though to be honest I'm at the point of throwing the kitchen sink at it!!! Best wishes.
Non pregnant female oestradiol ranges:
Early Follicular Phase 82 to 422 pmol/L
Mid-Follicular 92 to 422 pmol/L
Ovulatory Peak 118 to 1898 pmol/L
Mid Luteal 134 to 903 pmol/L
Post-Menopausal (not on hormone replacement) Less than 92 pmol/L
I'm also thinking peri or perhaps post menopause now. My hair has gone from poker straight (straw like) hair all my life to a frizzy curly mess in a year and half which I put down to post menopause.Have you looked into testosterone? Also even if you've had hysterectomy, you can really benefit from progesterone as this is a calming hormone and can really help ladies sleep.
Testosterone was an absolute game changer for me. I couldn't exercise ever before starting testosterone. Gave me energy, got rid of brain fog ( not poor memory though), all my aches and pains disappeared and just made me feel so good and happy.
Also as Fancy pants said you might need to increase your pumps, I'm on 6 and 200mg utrogestan. My body just loved hormones.
You mention sore lips. Are they sore because constantly dry or sore and swollen due to reaction?
I've had dry lips all my life and carry lipsalves every. Counted 13 in my handbag once. Had prescribed cream when I was a teen they were that bad. I do wonder if this is connected to my thyroid issue as I have dry skin and hair.
Hi sparkly, thank you so much for responding with such thoughtful comments and observations. I haven't had a hysterectomy. Instead of taking progesterone, I had a Mirena coil fitted, so just have the oestrogel pump. I did have a test for testosterone, as my muscle tone went south, and my sex drive was non-existent. It was totally humiliating speaking to an endo about this.... he was quite uncomfortable about it, which I thought was quite unprofessional on his part. Anyway he flat point refused to consider prescribing me testosterone, and suggested I take DHEA instead, so I take a very small amount 12.5mg/day and that did raise my testosterone levels, in fairness to him
The lips are swollen and sensitive, like if I have any spicy food it's intolerable. Feels like an allergic reaction. I haven't tried an anti-histhamine, though typing this I'll go and look to see if I have some!
Yes, I am a lip salve addict.... probably the blimmin thyroid, yes 😜 Best wishes
Yes, they can be uncomfortable about prescribing testosterone as it's not licensed for females yet so some don't want to take responsibility. Even though it was years ago.It's a difficult call when you have thyroid and peri/menopause going on together. Symptoms are similar and you don't know what is causing what. I went through hell but feel I'm fully ballance sex hormone wise..thyroid on the other hand 🤦🏼♀️
Don't give up on testosterone, yes we have to say it's for libido which is sad as it's so much more than that. Testosterone got rid of stuff I'd blamed on thyroid. I'm never coming off it, it's been that beneficial.
I can pm you with were you can legally buy from at a very reasonable price, not the place that sell you 3 sachets for extortionate price either.
I got the testosterone prescribed by the gynecologist at the menopause clinic. It was easy. Sparkly, what's your dose? Mine is 12.5 mg every other day.
I managed to get total and free testosterone tested prior to obtaining the prescription. The gynecologist didn't care about it but I told her I wanted information on my baseline level. She ordered a free testosterone test after three months. I had the blood taken at +35 hours. It was 25% higher at that time than my baseline. The nurse practitioner said that I did the timing for the test correctly. I suspect that by 48 hours the free testosterone goes down to baseline. I'd rather be using it every 24 hours except the pump is designed for men and 1 pump = 25 mg. It would be too difficult to semi accurately pump 6.25 mg.
She was all about how topical application of estrogens results in fluctuations and she was pushing me to use the Estradot. However, if fluctuation is an issue, then clearly the testosterone is fluctuating more than a daily application of Estrogel. ?duh? I honestly don't know if these doctors listen to themselves.
I have the next followup appointment next year in August. I'm tempted to get that test done at +12 hours just to see how high the free T gets.
I'm working on increasing upper body muscle strength. Right now I feel like someone beat the stuffing out of me. 😱
I agree that every other day isn't ideal. The sooner it is licensed for female use and is issued in female daily dose pump bottle the better. I was prescribed testogel sachets once but that's too faffy for me.I was so fortunate that my nhs Menopause specialist is very much for testosterone and said yes before even looking at my results. My last bloods were 1.1 (<1.6) so think I could increase
Why does the nhs only test for total testosterone?
You'd think free testosterone result is what was important like having ft4 and ft3 results. To show what testosterone is available. I know FAI was looked upon as a guidance to prescribing but that doesn't seem the case anymore. I need to have a read up.
I think all women should be offered a trial on testosterone
I'm in Toronto and the labs do both total and free which is good. But the units of measurement are different than what I find online which are units used in the USA. I had to find how to calculate and then compare with data provided online. The gel does get me into premenopause range but for sure it's not where I was when I was younger.
It's probably not difficult to get a prescription for testosterone provided the patient is referred to a gynecologist who works with menopausal and post menopause women. But a lot of women were scared off HRT years ago and it's sort of like the fear of eating eggs because, omg, they contain cholesterol and it will clog up the arteries.... heard once, remembered for life even if information has proven to be incorrect.
Australian women have testosterone at doses needed so maybe eventually we will as well. Don't hold your breath though.
Patches are expensive. I'm over 65 and the province has seniors' drug benefit but HRT and testosterone are not covered. For example, 4 months worth of Estrogel costs me $128. 3 months of Estrodot would cost $145 IF it is available. My pharmacist was complaining that getting it in stock was difficult and her current stock had just arrived after having put in the order almost a year ago. That doesn't sound to reliable to me.
One of my friends who is in her mid 50s just got a prescription for HRT (same stuff as what I take from the hospital women's health clinic). I told her: next up: testosterone! They were not interested in her current blood hormone levels. My endo tested LH and FSH some years ago (before she fired me during Covid) and with compounded cream HRT both came out at 'premenopausal' levels. The exact numbers I've got written down somewhere. But they were well within range and not even remotely at 'post menopause' range.
I have now got my routine established by taking the Prometrium before bedtime and also applying the Estrogel at the same time and applying the testosterone every other bedtime, so changing up that routine by then remembering which day to change an Estrodot is too complicated. I take the levothyroxine at bedtime as well. It's a simple routine and corresponds more accurately to the diurnal cycles.
The gynecologist wanted me to apply the testosterone gel to the backs of my calfs. After the August 1st three month followup I've been applying it to my inner thighs. I think the skin is thinner there and maybe more of it gets absorbed. (It's closer to where the action is..... if you get what I mean.....)
Such a shame you have to pay for it all yourself. Here I'm England all prescriptions are free to everyone on thyroid meds. Even prescription paying women now only pay £19 odd for year supply. We moan about the state of out nhs service but so glad we don't pay fill whack for medication like yourselves and US
Davina McCall has Australian Androfeme which is for women, off license. They are currently trying to get it licensed in the UK. Off License it is c. £100-£120 for c.100days. Prescribing fees and blood tests would be extra. Don't know if anyone has had it prescribed , off license, by NHS or not.
Look for a gynecologist in your area. Call them up and ask about testosterone. If they don't, ask them to give you the name of a specialist who does and then provide this to your GP.
A common cause, according to that link, is nutritional deficiencies, particularly in several B vitamins. I see the ones you've had tested (B12 and folate), are at good levels, but do you supplement a B Complex? It might be worth trying a good quality one if you don't.
There are other, associated conditions, that might be relevant listed on the link I gave.
I agree and would suspect low vitamin B6... Having recently read up on it, I wouldn't touch any b complex containing pyridoxine and go for the activated form pyridoxal 5 phosphate instead 😊 so Thorne Basic B plus maybe an additional p5p supplement might help 👍
Are you still under ' this endo ' or were discharged after the CT scan was clear ?
Do you spit your 2 grains Thyroid S - and this reading after just 1 grain ?
How do these T3 and T4 readings compare to your ' normal ' ?
These readings look much too low to me - if a fasting blood test at around 10 hours from last dose -
on NDT the T4 can be low in range but with the T3 proportionately higher in the range -
so that looks to be happening - it's just that you are not taking enough NDT to maintain both T3 and T4 in the ranges.
There have been some issues with some Thyroid S prefixed ' 22 ' batches ?
I've been taking Thyroid S for over 6 years but found I had to write off 3 x 500 grain bottles of prefixed ' 22 ' batch numbers -
and now back to my normal and on my normal dose on a ' 23 ' batch - so just hope it was just a blip with some prefixed ' 22 ' batches.
If you go into pinned posts - top right - Helvella blog - Thyroid S batches - very near the bottom of the extensive list - he has kindly monitored all forum members feedback on Thyroid S batch numbers over this past couple of years -
it might just help you know if you were / are caught up in this issue.
Hi pennyannie... ooh woah, I was not aware of that issue with Thyroid-S, thank you for the head's up! My current batch is prefixed '23', but it is a new bottle, so I wonder if I've been on a slow descent on a '22' batch for the past year or so....that would fit with the timeline of my woes. 😮 At the moment I've been taking 1 grain at 6am and 1 grain at 4pm. I'm going to increase my dose slightly by a quarter grain, and do 1 grain at 6am; quarter at noon; 1 grain at 6pm and see how I get on with that.... thanks again. I'll have a look at the pinned post 👍
I actually found a post giving the link ( I don't understand how to do them ) I know - never mind and please don't explain -
anyway you should have received a message saying that you've been mentioned - press the message and you should get to the post where I mentioned your name -
with the link detailed in full - and yes very likely you were caught up in this reformulation of Thyroid S - I'm now on a 23 batch and have my brain back - most of the time !!
I guess as I haven't a thyroid - post RAI thyroid ablation for Graves - and fully reliant on Thyroid S I maybe know more readily when my thyroid hormone levels are off -
Suggest you get the core strength vitamins and minerals run as ferritin, folate, B12 and vitamin D need to be maintained at optimal levels for optimal conversion of any thyroid hormone replacement - and if not at good levels anyway may compound your issues further.
I now aim for a ferritin at around 100 - folate around 20- active B12 125 ( serum B12 500++ ) and vitamin D ar around 125.
Maybe track yourself on physical symptoms and see if anything happens - when I switched to Thyroid S from 125 mcg T4 - I tracked myself on blood pressure, pulse and body temperature AM & PM - just to get an idea of what was going on inside and found whilst my blood pressure and pulse remained constant my body temperature slowly rose from 35.4 to 36.6 where it now still sits some 6 years on from taking NDT.
Though always need socks on and 2 pairs in the colder months !!
If you have a parathyroid problem you will know by having parathormone checked and IONIZED calcium levels in your blood. If high (or low), there can indeed be a problem; to know: HYPER or HYPO. Parathyroids control the level of calcium in your blood, you have 2 of them on each side of your thyroid ('para'), so 4 in total (some people have more, some less, sometimes they are in a different location = ectopic).
Your Vitamin D level is over 50 but by new guidelines it is still classed as being insufficient and can still cause symptoms most commonly lethargy and muscle weakness.Do you use a daily Vitamin D supplement at the moment?
I use a BetterYou D3 with K2 active spray , it absorbs via the mouth instead of the stomach so it gets passed those stomach absorption issues. The dose is 3000iu which is a good safe dose, as I have some Vitamin D from a prescribed supplement of 1000iu . The top safe dose is 4000iuvwhen you are trying to raise your range. Even though it's absorbed by mouth it's still a good idea to take it after your fattiest meal if the day for maximum absorption.
I take this amount every day during winter months , and alternate between the spray and the 1000iu supplement in spring and summer. I didn't get my level above 35 until I was found to have Functional B12 and Folate Deficiencies no matter what I took, after getting injections I took 4000iu a day until I finally got my Vitamin D over 113. Then I changed to the alternating method above so that it stayed over 100 but would not go too high as that also causes nasty symptoms. I didn't feel myself again until my Vitamin D level reached 85 which is just over what new guidelines class as Normal. Having my B vitamins under management also helped me to increase my ferritin/iron.
Although your Ferritin is low mid range this can still cause some symptoms , but it could also be an indicator that your Vitamin C levels are Deficienct, as the body needs Vitamin C to help absorb Ferritin and most B vitamins , except Vitamin B 12 ( which is better taken without Vitamin C). Vitamin C insufficiency also causes fatigue but can cause swollen lips and gums , and sore skin in general.
Vitamin C doses aren't meant to be high daily as it isn't stored and the body eliminates anything over 500 mg.
I use a non acidic active liposomal Vitamin C liquid each day called Nutroliq ( it's a good product but also cheaper than most , it's available on Amazon) but only half the dose , or .75 on the dropper , because the body doesn't need more. I use it in water at the same time I take my active iron, Folate and other vitamins, except B12 ( I have injections but use a daily sublingual B12 as well) , after a meal, as it's medically recommended to take some Vitamin C with Folate and Iron for better absorption.
You may find that it's Vitamin C that is the missing link .
Sometimes low normal or insufficient nutrients can have a big impact on your thyroid results and symptoms in general , even though doctors have a habit of seeing borderline results and ignoring them.
It's worth getting parathyroid testing if things are persisting , even if it's just to rule it out as a possible cause and give you peace of mind.
Let's us know how you get on and hope you feel more yourself soon , Bee
Thanks so much, Bee, that is all super helpful 😊 I hadn't thought about Vit C to be honest. I would class myself as having a 'healthy diet' so haven't really been looking at supps, Seems a bit silly now in hindsight, since I've been suffering at such a profoundly decrepid state, and somehow just accepting it. Just when you need to coral yourself and deploy your best problem solving, the low energy/low mood/brain fog just annihilates any mojo to try to fix yourself
So I really can't thank everyone on here enough for coming to the rescue.... I feel quite emotional at all the practical help and deep attempts to understand my problem. Thank you!!!
richar03 hell from the Weasel. I have hypothyroidism and haven't suffered near what you have, so I have a lot of empathy for you. On the swollen lips? Just asking, have you eaten any shellfish, crabs, oysters etc especially from warmer waters? And another is, did you have contrast with your imaging. Please don't confuse the question. One is you could have a toxicity from a food or drink product such as shellfish. The second is You could have a reaction to the contrast even though the contrast does not have any shellfish products in it. Also the iodine could be elevating tests from contrast if you had tests right after the imaging.
I know you are at wits end but im trying to help. I saw the number of things you've been dealing with an felt sad for you. Sometimes people and this includes Doctors are dealing with the same thing over and over and develop a routine of dealing with it and don't step outside of the routine fixes.
So I was looking more broadly and wondering if other co morbidities exist. Just because symptoms can overlap from one illness to another and make it look like the known one is the only one, when there two or more co morbidities and they have similar symptoms.
Some things to look into but may not be the only ones are :
#1Chronic disease, Heart or Kidney.
#2Inflammatory Disease "Rheumatoid"
#3Reactive Arthritis painful and swollen joints, ankles, knees,. Extreme tiredness, puffy eyes, swelling in fingers...
But I also think it's possible the dry eyes and swollen lips could be a toxicity. Do your eyes itch? If yes do you have anything else that itches?
My hypothyroidism sometimes causes dry itchy eyes, but I also have a tracheostomy and that dries me out. I lose body moisture from it so I use a little filter that captures moisture and keeps heat in. I still have to drink plenty of water. And I also get dry skin, sensitivity to cold, cramps in leg muscles. But I've been able lately to get it under control.
Your TSH 0.125 mU/L is a little low and could indicate either too much meds or hyperthyroidism. But I'm not a doctor so the things I'm bringing up are for your evaluation and consideration. I just wanted to say sometimes the answer is over the next hill or in a different haystack. Please take care and don't let it get you down. You seem determined and you're not alone. Sometimes it feels that way I know. I hope you get it sorted out! God bless you and your family!❤️
Crikey, thank you The Weasel.... now at least I don't have dry eyes as I'm filling up from your kindness!!! I was feeling pretty desperate when I posted my message - I used to be able to bring a lot of energy to problem solving my health / other issues, but I feel like I'm just ground down by it all at the moment. Someone else has said about juggling menopause with thyroid issues, it is a bit of a double whammy. I used to really enjoy exercise and hobbies and they help keep you healthy. I'm finding it extra tough that my 'go-to' remedies to feel better are out the window at the moment.
I have much to be grateful for in life, and I'm usually a very positive person, but gabkad mentioned feeling like the stuffing had been knocked out of them and that's how I feel too.
I'm going to implement the supplements advice I've had, visit my GP and get the parathyroid ruled out and discuss a referral to a menopause specialist for testosterone advice, and up my Thyroid-S dose by a quarter grain..... hopefully something in the mix there will help!
If not, I'll return to your thoughts about digging into other potential health issues.
It sounds like you have a lot going on there too.... sending you love and a hug xx
Well, I knew you were really under it all and it's cumulative, so I tried to break up the compounding effect. Just remember that you're not alone! Keep your chin up and smile 😁😁😁👍❤️
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