Sorry for the long post but would really appreciate opinions on my latest blood test results before I meet my Endo on Tuesday. Private Endo, nice chap, recommended here - Oxford based.
So, after feeling fed up with being treated as a hypochondriac, I now wonder if I have actually become one.
I continue to feel as if I am not functioning as well as I should but in quite subtle ways.
I have been worried that I might, in fact, be overmedicated because my sleeping heart rate can be much higher than my resting heart rate which is confusing. Resting heart rate is around 64.
Symptoms are:
Fatigue. I find it difficult to fall asleep and then find it equally difficult to wake up. I seem to need a good 10 hours to feel rested. Working full time doesn't give me that opportunity! The difficulty in falling asleep is often due to my legs being uncomfortable. I have restless leg syndrome but it isn't that - this is different. They just ache. I also find it difficult to 'switch off'.
I then hit a slump almost every day at 3pm. I can tell the time by it. I can't do much after that but have to anyway. When I meet up with people in the late afternoon on the dog walk sometimes I find it very difficult to have conversations. It's like I have no words left in my head... not sure if that makes sense.
My feet hurt most of the time. I now have plantar wotsit which I've never had before. Really bad in morning and evening. Legs continue to be weak and cause pain when walking (I wish this would go!). Endo didn't think this was thyroid related but it was the condition which took me to the GP in the first place and has momentarily disappeared each time I had a dose increase.
Cognitive issues. I seem to slip between being just generally confused, have difficulty particularly with planning (my job is planning mostly!) and then difficulty concentrating. I can 'space off' easily.
Water retention - swollen ankles (most days).
I am not gaining weight, but also not losing. And the 'normal' me would be losing weight with my current diet and level of activity (walking mainly). I maintain weight on my stomach, thighs and in my face.
*Sometimes* I have constipation but not consistently.
I still need my fluffy socks in the evening despite it being warm. But this might just be to support my hurty feet rather than just cold...
Am a bit low but that could be a range of things - fed up with not feeling 'right', lockdown, work, etc...
I used to be on HRT but stopped that in November 2020 just after I was diagnosed with underactive thyroid because I read that HRT interferes with the medication. I was close to considering stopping anyway because I had been on it for about 4 years (and I also found it difficult to tolerate progesterone). I loved the oestrogen though.
I wonder if stopping HRT might be causing issues? I don't have the hot flushes anymore (which were the reason for needing it in the first place).
My vitamin and iron levels are all very good. I take D, K, zinc, selenium and magnesium as recommended by everyone here.
On 100 Levothyroxine (Teva)
My very latest blood results (as ordered by the Endo) are here below. These look okay? My T3 looks okay? I don't know how to use the calculator...
All tests done fasting, first thing, last dose 24 hours previously. 29 June 2021.
Serum free T4 level - (RN) - Normal Result: No Action Required13.2pmol/L9.01 - 19.05pmol/L
Serum free T3 level - (RN) - Normal Result: No Action Required4pmol/L2.63 - 5.70pmol/L
Previous results (Medichecks) (on same dose 5 May 2021)
TSH X 0.08 mIU/L (Range: 0.27 - 4.2)
Free T3 5.5 pmol/L (Range: 3.1 - 6.8)
Free Thyroxine 18.0 pmol/l (Range: 12 - 22)
Any thoughts are welcome please? I'm sorry this is so long. It's taken AGES to put this together. I think I've remembered everything.
Oh, one last thing. Do people generally *only* try T3 if they are poor converters? I don't think I am (from my results) but the Endo muttered something about possibly trialling T3 when I saw him. In other words, would it likely *not* be beneficial to try T3 if I convert well?
Thank you again, sorry!
Jo
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Hi SlowDragon thank you for answering. Yes, these are the correct ranges. Seems I've gone 'down' from my last results while on the same dose. I don't know if I'm lactose intolerant. I had to give up yogurt because it made me bloated and milk because am on a low carb diet. I have milk alternatives. I eat cheese with no problems? This was the first brand I was introduced to. I have had several different brands along the way as my dose was upped, so I found it hard to work out if my symptoms were those of being not yet medicated well enough or related to brand. I can ask my Endo if I can request a different brand (and an increase) do you think?
I really don't think swollen ankles and plantar wotsit can be all in your head - they're down the other end! Doctors use the 'all-in-your-head' gambit when they have no idea what's wrong with you. Patients really shouldn't start buying into it, because you know your body, and you know when something's not right with it. Your body, not your head!
Serum free T4 - 13.2pmol/L (9.01 - 19.05)
Serum TSH - 0.16mIU/L (0.35 - 4.94)
Comment: Adequate dose.
(Absolute rubbish! You can't tell if you're on the right dose just by looking at the TSH. It's the FT3 that tells you that - plus symptoms, of course.)
Serum free T3 4pmol/L (2.63 - 5.70)
Your results aren't easy to understand, the way they're written, but have I got them right, there? So, your FT4 is 41.73% through the range, and your FT3 is 44.63%. So, you appear to convert ok, you're just under-medicated. The FT4 should be more like 80% and the FT3 75% - approximately, of course - you may even need them higher. But, those results are just plain too low. So, you see how you really, really cannot rely on the TSH to tell you everything, as doctors think! 100 mcg levo is not a very high dose. Not surprising it's not enough.
Do people generally *only* try T3 if they are poor converters? I don't think I am (from my results) but the Endo muttered something about possibly trialling T3 when I saw him. In other words, would it likely *not* be beneficial to try T3 if I convert well?
Well, now, that all depends... It's not just about how well you convert, it's also about your level of FT3. With your results, it's certain that you would benefit from T3 because it would raise your FT3! But, you'd probably get the same effect from increasing your levo. However, never look a gift horse in the mouth. If he wants to give you T3, let him!
If it's any help to you I asked the same question as you recently do good converters need to add T3 I'm more or less the same as yourself I have always converted well on Levo Mercury Pharma only no brand changes for me I've been on 100 Levo for quite a long time but there has been a slight drop in t4 T3 recently but I've never ever really felt well even with good results so at my app with Endo recently he has added trial 10mcg T3 to my 100mcg Mercury Pharma Levo I never change brands ever. greygoose is right upping Levo if we are good converters should do the trick but it hasnt with me I've had top of range t3 t4 in the past and never felt good but atm I'll try the T3 and see how I feel I'm also low end iron range atm so that doesn't help Thank goodness for this forum! Good Luck
I had this reply from SeasideSuzie when my results were close to yours.
"Your results look fairly reasonable with FT4 at 60% through range and FT3 at 54% through range. Many of us would find these results too low and would want both higher, and you have plenty of room for an increase in Levo if you are symptomatic."
Actually I'm still feeling the leg thing you mention, specially sore in the morning, the 3pm slumply no brain, and needing a blanket on a summers evening! (I actually made a hot water bottle this week). And still putting on weight.
Reading your post has made me think I need to talk to gp again, I tried after my most recent results, but she just said she wasn't going to reduce the levo (TSH below 1), and that I should try to diet and get more exercise... I need more courage to ask for an increase!
I think I'm lucky because as soon as I asked for a referral to the private Endo the GP responded with relief. The blood results have 'managed by professor XXX' next to the TSH result - so GP can happily wash hands of any responsibility I suppose. It's expensive though which is completely unfair and it shouldn't be like this.
I feel for you and I can relate to the brain fog and other spacey stuff....
I am not knowledgable at all to offer any solid advice BUT one thing I feel desperately compelled to say is that TEVA and I really do not get along at all - to the point I freak and do anything I can not to take it, you have to be so careful as it seems pharmacists and GP surgery staff often have no clue about brands and how it can mess some of us up. I know from TUK - a lot of people struggle with TEVA, although I’m sure a lot do fine by the range they produce but honestly, please consider if desperate giving a brand change a go for a few months, probably as easy as changing chemists, I’m happy on Accord or Activas from Lloyds.
I’ve recently been titrating my meds up and then down under my endo and no matter how many messages, emails, phone calls to GP surgery and Pharmacy stating no 25 or 75 Levo as I knew it would be TEVA, I’ve got boxes of the stuff!!!
I always read the side of the box and the strip inside. Sorry to ramble, but wanted to share in case it saved you - take care and good luck xx
Hi @Levo50 thank you for responding. Could I ask what differences you experience between taking Teva and other brands? I've been confused about how Teva side effects present themselves? Thank you
Not in your head! And your Endo is wrong, the painful legs, feet, swollen ankles - all thyroid symptoms and I have all of them. You know it's thyroid related because it stopped when you increased doses for a short time. Same here. I started adding T3 to Levo at Christmas and my legs and feet improved for a short time. My results are very similar to you in the % through range figures and I KNOW I'm very under medicated right now. I have difficulty converting so I have to try to get my T3 level higher.
If you don't need Teva for lactose intolerance I'd suggest you try a different brand for a few months and see if it makes any difference.
You know you aren't making this up. You are under medicated and must fight for more.
Thank you FancyPants54 I was surprised Endo didn't recognise the 'leg' symptoms. He was recommended to me through this site. I wondered if maybe I didn't describe my problems clearly enough. I do sometimes think it's really difficult to articulate what is wrong clearly enough - I seem to be able to put it down on paper but verbally I just end up babbling and sounding like an idiot. I'm always so afraid to sound like a hypochondriac that I think I end up downplaying everything. Sigh.
If symptoms or poor control of thyroid function persist despite adhering to a specific product, consider prescribing levothyroxine in an oral solution formulation
I take HRT & have managed to reduce oestrogen dose by half but if I miss it entirely, just one dose I I feel v flat and tired. I take it at least 3 hours after levo though because you’re right about it possibly interfering.
Thank you janeroar I think I reached a natural end with my HRT mainly because I kept forgetting to take it, rather than grabbing the oestrogen with relief every morning. Although, in retrospect, maybe I just started forgetting to take it because of Hashi memory loss! I was also coming up to my 'progesterone' weeks and simply couldn't bear to put myself through it anymore
Your free T3 and free t4 are both about 60% through range do you’re right you have no difficulty with conversion, but you could take a dose increase and not be over range.
Getting my T3, over six helped me in lots of ways - back and hip pain and migraines gone) but… my feet are still killing me!
Sounds like your doc is ok though so just tell him what’s going on and hopefully he’ll agree an increase.
As to hrt, I take it and am not keen to stop - Dco doesn’t think is a problem with thyroid meds just might need a little more meds to compensate. Can I ask what you mean about not being able to tolerate progesterone ?
Hi JAmanda thank you. I might ask Endo about HRT but am scared to muddy the waters in terms of thyroid hormones. Oh, these hormones. I found the progesterone 'part' of HRT really problematic. Hideous. Bloated, weight gain, tearful, paranoid, angry - it was like my head completely changed overnight. I ended up on Tridestra with oestrogen for 3 months and then progesterone for 3 weeks. That way I could look forward to 3 months of feeling fine. Then, of course, I had 3 weeks of misery but at least it was only every three months.
Hi ThyroQueen thank you. So, if you don't mind, please could you explain? Were your levels all pretty good in range but you were still symptomatic? Can you remember which symptoms adding T3 were reduced? Thank you
When I first went on thyroid meds, back in my 30s, my levels were "fine" according to the standards of the 90s, which I think have been updated? But I had classic hypo symptoms. As it happened I was given Levo and then a Levo/Lio combo (75/20) by psychiatrists, who in the US often quite sensibly prescribe it for depression. At one point I ran out of T3 and immediately had a terrible depressive episode, went back on it and got relief!
But I continued to have nasty hypo symptoms - weight, puffiness, constipation, dry skin, fatigue, everything but the freezing cold which perimenopause "fixed" - until an endo nearly killed me by trying to get me off T3 and onto all T4 again, just a couple years ago. At that point, my levels were fine, because I was converting, but on T4 only I was bedbound. And then I found this forum, and self-medicated myself back to some level of function.
I haven't had my levels checked since, actually. I don't care what they are, as long as I can get out of bed? At some point I'll need to get looked at by an endo again, but since I don't trust them at all, here in Germany or in the States, I dread it. Meanwhile my primary care doc prescribes for me, so I am able to get my weird mix of 75T4/37.5T3 daily.
I wasn’t told it was in my head - I was told I was needing a holiday 🤣🤣🤣 it was obvious the GP thought I was a nuisance/ hypochondriac/ time waster or whatever.Three months down the line I was on my knees with such an overactive thyroid it couldn’t be ignored. I’d say that a holiday won’t really cure Graves’ disease. Definitely not in your head. Keep going.
Oh, no, Fruitandnutcase that sounds awful. A colleague of mine was diagnosed with Graves at the same time I was diagnosed with Hashis. We both thought we were going round the bend for months but with different problems (but some seem to overlap - ie, we both find work even more difficult now!!). She has really had a very hard time, and I feel for anyone with Graves
It really puts you off doesn’t it when you know you are ill but are given the brush off. I became very hypo during my treatment and honestly they are both pretty awful except I think you probably get taken more seriously by your consultant if you are hyper. I always feel sorry for people who are hypo / hashis. Hope you get well soon, probably good to be able to share th8ngs with a colleague. The funniest bit of advice I was given back then was after I had my first endo consultant and mentioned to someone who had a goitre - think she was hypo - anyway, I said I wasn’t all that keen on him, if my husband had been in the room I’m sure he would have ignored me and spoken to him. Anyway when I said that to her she said ‘oh I wouldn’t worry about that, you’ll never see him again’ and she was quite right.
Thank you 😊 I’ve come to realise all thyroid problems suck, and the medical response sucks even more! Thank god for this site is all I can say! Take care 😊
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And, good luck!
Hi all. My recent blood results? Can I get some advice on these please 😊👉🏻
Got my results now, advice much appreciated!
My latest test results, can anyone help me to understand them!
