Hi all I have another 3 weeks to go on a 100mcg and I feel so ill not sure how much more I can take! I have the exact same symptoms I had before diagnosis, chest pains, breathlessness, sweating profusely and pain in what I assume are my tendons. I had my ‘official’ increase on the 9th of May but I’d already increased the dose to 100mcg two weeks earlier. It took me two weeks to get appointment after my blood test.
Are there any people out there who had similar symptoms and didn’t benefit from an increase in dose? How likely is it that in another three weeks time I suddenly feel ok and don’t need an increase? I can’t understand the reason for waiting 6 weeks when there’s no way I’m suddenly going to feel better.
Please feel free to shout at me! 😭
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No reason to shout at you. But, you have to wait the six weeks because that's how long it takes for the last increase in your dose to become fully active. If you test before, you won't get complete data. You might find that after the full six weeks, you're over-medicated, and that's what's making you feel bad. Not saying that's the case, but it's a possibility.
Have you had your nutrients tested? Can't remember.
Thanks GreyGoose. Yes I’ve had all my vitamins tested and I’m supplementing. I’m also gluten free because my antibodies were really high.
Because of the 2 week wait to see a Doctor I’m actually 5 weeks on 100 mcg but they won’t test me for another three weeks because that’s when the Doctor official upped my dose. It’s taken me 5 months to get to 100 mcg. I feel I’m definitely under medicated but I guess there’s nothing I can do but it’s do hard. I’m trying to care for my elderly mother who lives with us and has a broken shoulder and dementia and it’s almost impossible to do. There’s also every reason to shout at me, but thanks for not doing so. 💐
I see. That makes a difference. Not sure there's anything you can do about that - unless you unofficially up your dose yourself, again. No-one could blame you for doing that, under the circumstances!
Thanks GreyGoose, I’m really trying not to but I don’t think I can hold out much longer my mum is so demanding and she doesn’t accept there’s anything wrong with me. She can’t do anything for herself, she’s supposed to ge wearing a sling but keeps taking it off and telling me she can’t move her arm, so I feel like I’m in a nightmare.
I am confident that an increase in Levo would make me feel better and more able to cope with her. My temperature is 35 and I’m saturated in sweat I have to keep mopping myself down with a flannel it’s ridiculous no one should have to live like this x
No, no-one should. But, if you increase now, no point in having that test in three weeks time. You'd have to put it off to six weeks, or you won't get accurate results.
Thanks GreyGoose, it did occur to me that I could up the dose and delay the test. I will see how I feel tomorrow and decide then. I’ve made it through today and hubbys home now so he will take over care duties. Kindest regards and many thanks 💐
I can't see from previous posts whether you are vitamin D deficient? You seem to have suffered from bone/muscle pain. Have you checked whether you are eating enough calcium rich foods? Also, have you excuded Hay fever. re. The breathing? It's that time of year.
Hi Nanaedake, I did write you a comprehensive reply but it seems to have disappeared!
My Vit D was 69 the range is 50-200 and I’m taking better you Vit D plus K2. I’m also taking selenium, magnesium, zinc and a whole host of other vitamins on advice from members. I’m also gluten free. My antibodies were really high as was my ferritin and B12 which I’m not taking and I wasn’t supplementing at the time.
If you reach a good TSH level and still feel unwell, ask GP to investigate other causes for your symptoms. They should be able to run more blood tests. Vitamin D is still a little low as it's better mid-range. We are at the end of the winter though and if you continue to supplement plus try to get 15mins of mid-day sun it might rise. If your B12 is high and you're not supplementing, it could be because you have great nutrition or it could be because of another problem. Ask the doctor to check out the high ferritin and B12 to eliminate anything underlying it. I don't think high B12 would be linked to poor thyroid function.
Just in case this makes you feel a tiny bit better, whenever I have a dose change, I need 8 weeks to feel the full effects. I can feel rubbish whilst waiting for the 8 weeks to be up, and I get impatient, but it really is worth waiting that long to get a true idea of what is going on.
Thanks SSS, can I ask if during those 8 weeks you have several weeks of feeling really well and then start to feel really poorly and then well again?
I understand what everyone is saying but no one has said they feel great at the start of the 6/8 weeks then feel dreadful. If I felt dreadful all the way through I could understand it but I feel great for a few weeks and very quickly after a dose increase.
I’ve had two dose increases and both times I’ve felt the benefit really quickly, surely I can’t be mistaken this time?
One other thing worth mentioning it’s like I have 2 hours of energy/ fuel that I can eek out across the day but once that’s gone I physically can’t do any more. Is that the same for everyone, everyone has a limited/ set amount of energy? 💐
I think we're all different. I've never found that I feel better first then feel worse, I don't get a burst of energy and then it's gone, it doesn't work like that for me. Even with T3 I don't feel what other people say they feel and it wears off later in the day.
For you, it's probably a case of you haven't yet reached your optimal dose. You're feeling better for a few weeks, then you feel worse because you're getting ready for the next increase - if that makes sense, my brain is frazzled today
I upped my dosage to 100 mcg Levothyroxine from 75mcg after I accessed my blood results on line and posted on here recently.
I did need an increase as was starting to feel awful on 75mcg, anxiety was through the roof!!!, plus my results TSH, T3 & T4 not quite right yet.
Anyway, I wasn’t able to see my GP to discuss my bloods as the surgery currently has two GP’s off sick.
My GP had given me extra Levothyroxine incase I couldn’t obtain an appointment for blood tests within the 6 weeks period, so I decided to increase my dosage.
Since taking it, I’ve been absolutely exhausted, neck stiffness, temperature was improving (take it every morning) now decreasing again, freezing cold.
On 75mcg I was feeling good then started to feel awful. This 100mcg not feeling good at all from the word go, same brand as well.
Today, I struggled to get out of bed, in fact I didn’t go to work as didn’t feel it was safe to drive to work ( my journey is an hours or so). Despite me sleeping like a baby when I wake up I have no energy.
Like you I’m sick of this thyroid game, but every says it takes time.
I desperately want to feel normal. I’ve only got 5 weeks left on Saturday until my next 6 weekly blood test, that’s if the GP agrees to count the weeks from when I started unofficially and not when I see him.
I’m wondering if I will need T3 adding, but, as someone replied to me until your TSH gets to 1 or below, you apparently can’t tell, plus I post my results on here.
my symptoms seem to point that I need T3, unless it’s an adrenal problem, tired in the mornings, ok at lunch, no energy afternoon or evening.
I’m booked to have all my vitamins checked next week via medi checks as GP will not do this.
I don’t think I will need T3 because Levo seems to make me feel great quickly. I think if my doctor had started me on 50 mcg and my journey had taken the normal course 6 weeks to blood test and increased dose, as opposed to 8 weeks then my journey might have ended sooner.
I have such good results when I first start a new dose that I’m convinced once I reach the right TSH of less than 1 and my T4 and T3 are in the right place in range that I will do well on Levo but only time which I don’t have will tell!
I hope you start to feel better soon and you get the right combination of medication quickly. Kindest regards 😀
I could have written your post as this is happening to me now. After several years of BAD thyroid management by my PCP/GP J finally was referred to an excellent endo. I had already learned from various posts here that I could expect to feel worse before starting on the upswing. It's true, I am almost at the end of this 'dip' and I will say 'Just stay with your program for now. My first 'new endo visit was early April. A full workup resultd in needed info and a change in meds/treatment. My next (2nd) visit is next Wednesday, June 6th and I am just about counting the hours because I know he will continue to listen to my sx, check appropriate labs, and will adjust meds/dosages to keep me moving toward feeling better. The first 6 weeks are hard.
Thanks Irina1975, to clarify I was diagnosed on the 4th January and it’s taken 5 months to get to 100mcg. I felt really well when I first increased my dose for the first 4 weeks it’s only the last week I’ve started to get symptoms again. I’m 99% sure I’m under medicated and that a dose increase will improve my symptoms. I am going to try and wait for as long as I can but three weeks is a long time feeling like this. 😭
I know. And for me it seems day by day. Some days I feel great and others really down. BTW the symptoms I seem to notice improving first (though subtle) are physical ones and the sx lagging behind are neuro/mental-anxiety, brain fog, feeling overwhelmed, 'short fuse', etc. These seem the hardest to cope with for me. Good luck for us both that changes won't be too long in coming. Right now I have been isolating more as I live in a senior living bldg and some of the other residents just get on my last nerve. Don't want to have to sweep up after myself so avoid social chit-chat for now. Especially as we are all old, and conversation tends to revolve around everyone's medical problems. GRRRRRRR!! 😡
Hi rosserk. Hmmm. This sounds like one of your free’s might be too high in range and the other is too low. Those types of symptoms often come when either FT3 or FT4 is way too high. My guess is FT4. Can you please post your levels of FT3 and FT4, and TSH wh n you increased your dosage, and what was your previous dose.
Hi rosserk. Can you type the results and ranges into this post, as ? Very hard to read. I can barely read those results even when I open a new window and zoom in on them. If I squinted, I could just barely read them. If would be helpful if you also post previous bloods, ranges, and dates, med dosage and correlating symptoms.
You have Hashimoto's based on your very high TG and just over range TPO antibodies, your TSH is much too high, your FT4 is too low, and your FT3 could be higher. You are under medicated. Your symptoms are from having high antibodies, as well as your thyroid being too slow.
In addition to needing more T4 in order to bring up your FT4, you could add some T3 to you T4, this would raise your FT3, which which will help suppress your TSH, and help take the strain off your thyroid. This will help lower antibodies, plus get your levels in a better part of the range, and then you'd feel better.
Most Hashi's patient's feel best with their TSH at the bottom of the range, or at least 1.0 or less. When TSH is lowered, FT3 and FT4 increase, and symptoms decrease (as long as one or both are not too high in range). For comparison, my TSH four weeks ago was higher than it's been in awhile. It was .696. Along with that increase of TSH, my FT3 decreased, and so did my FT4. I still have almost no hypo symptoms, but if my tests in two weeks show similar results, I will be increasing my T4 by 12.5 mcg, and my T3 by 5 mcg. I don't want my free's being too low or less than optimal for very long.
My Doctor refused dose increase at this point but two weeks later persuaded another Dr to increase dose to 50mcg on the 5th March and agreed to check TSH on the 7th
7th March
TSH 3.73 range 0.27-4.2
T4 13.1range 12-22
2nd April Approx increased dose to 75 mcg because I was feeling so ill and couldn’t get appointment, initially felt great but went down hill towards end of April.
1st May
TSH 3.85 range 0.27- 4.2
Free Thyroxine 15 range 12-22
Total Thyroxine 104 range 59-154
Free T3 5.31 range 3.10-6.80
9th May persuaded Dr to increase to 100mcg
Felt really well all symptoms much improved and I was functioning until 23rd May
Symptoms always the same
Temperature 34.5 - 35.5 cold to touch but saturated in sweat
Chest pain, low heart rate 48-55
Pain in Achilles’ tendons difficulties walking
Heel pain
Elbow pain
Breathless
Blood pressure dropping 60/40
Concentration poor
Unable to sleep
Light headed feel like passing out
Each time I’ve increased dose heart rate 65-78 no chest pain
No chest pain
No sweating
Temperature 35-36.5
Blood pressure 120/70
Pain tolerable
I notice an improvement quickly, usually within days, the contrast is remarkably but at the moment short lived. I’m convinced if I reach the right dose of Levo I will be fine but the slow journey to get there is a real struggle. It’s annoying that if I’d had a different Doctor they might have chosen to start me on a higher dose and my journey would have been much shorter. Also if I’d never gone on the forum I’d still be on 25mcg because my Doctor said my thyroid was fine with the introduction of Levo!
Hi rosserk. Thank you. I can see it now. I am so sorry that your doctor doesn't know how to diagnose or treat thyroid disease. First off, they are not running the right labs. There are two thyroid hormones that work together, not one. They are called T3 and T4, and the tests are called FT3 and FT4. These tests need to be tested together, otherwise the status of your thyroid cannot possible be analyzed. Secondly, the Total tests are irrelevant and the wrong test because they are combination of your free/available and your not free/unavailable level. Thirdly, your TSH is much too high, so this means your thyroid is too slow and you are under medicated. Fourth, since FT3 was not tested, it's impossible to know if you need T3 in addition to your T4, or just need more T4. Lastly, your FT4 is too low (but your high TSH is a clue). Your level is not even up to 1/2 range. It should be between 1/2 and 3/4 range or 17 and 19.5. Anything too low and below 17 will give more symptoms, just anything too high or above 3/4 will give more symptoms.
Were you for Hashimoto's, autoimmune thyroid disease? Hashi's is the leading cause of hypothyroidism. These tests are called TPO/ab and TG/ab.
Your symptoms are all classic hypo symptoms, or if someone like you is on meds and have similar blood results, under medicated symptoms.
Thanks ShootingStars, yes I have Hashimotos, but I only know that because SeaSideSuzie told me my doctor refused to test saying it was irrelevant! I had the Medicheck Ultra Vit Test and my results were
Hi rosserk. You are very welcome! What is wrong with these doctors? Hashi's is the leading cause of hypo, and knowing you have it completely matters.
Your Vitamin D is quite low in range and can cause symptoms. It should be up near 200. Yours is 68.4.
Why is your ferritin so high? This is not good and can cause all kinds of symptoms. Have you had a complete iron panel so you can look at all of your other iron values? This is very important to know. Are you taking any iron supplements or eating lots of iron containing foods, like beef?
I eat a lot of chicken too much really, but not much red meat maybe twice a mont, certainly not excessive. Though I am on a low carb diet because my blood sugars are randomly high, I’m also prediabetic.
I asked my doctor to do further tests re the ferritin level being high and she refused saying it was only slightly out of range and nothing to worry about.
I don’t know if this is significant and I feel silly saying it but I can’t get it out of my head. I had a heart monitor for seven days. When I had the monitor fitted, three of their machines broke when they were fitting them. They couldn’t understand why they would the machines kept defaulting. Eventually the nurse tried a machine on herself and it worked fine but kept giving a faulty trace on me. She said she thought perhaps I had high level of metal in my blood?
Anyway they finally got a machine to work but the pads really irritated my skin, I was determined to get an accurate recording so put up with the discomfort for the full 7 days. When the pads were removed my skin was badly burned and you can still see faint scars now where the pads were. Do you think that’s significant or just coincidence?
I am also low carb, high protein, high healthy fats. When you say too much chicken, how much is too much? What other foods do you eat? Leafy greens?
Hm. It is not good when someone has high ferritin but it's not because they are taking iron supplements. It would be more normal for them to have mid range or lowish ferritin, depending on their diet. Getting a complete iron panel is so important. You can still have iron overload because your circulating iron levels might be toxic, even if your ferritin is mid range. In your case, it's over range. (I had ferritin of 50 and the rest of my iron panel was overload.).
Iron overload can present with symptoms similar to iron deficiency. It can lead to organ damage or organ failure. There is a genetic condition called hemochromatosis which leads to iron overload is is the primary cause. Muscle, joint, and tendon pain can be caused by iron overload.
What you just said could be very significant: Iron overload can cause heart problems. IDK. That does not sound good what the nurse said either way, with the heart equipment not giving good feedback or if you could possibly have heavy metals in your blood. You should not have high levels of metals (toxins) in your blood. Have you been exposed to lead, mercury, chemicals or other toxins?
Do you have diabetes, arthritis, liver problems? Did they do a complete liver panel?
That is really odd that the pads burned your skin. Perhaps it was a reaction to latex? Do you know if you have a latex allergy or other allergies? Could call that medical office to find out what the pads were made of or if they were medicated with something.
My diet isn’t bad, I eat chicken 2/3 times a week. I don’t eat enough veg but I’m addressing that.
The pads were hypoallergenic and they said they’d never had a problem before. I will post a new thread with a picture and see if anyone else has had similar.
I don’t have arthritis or liver problems but I was diagnos3d as diabetic and given metformin by a Doctor at our drop in. My Doctor went mad when he found out and sent me for an oral gluecose tolerance test which was normal and he withdrew metformin and told me to stop taking them. That’s when I went low Carb because I knew there was problem. Several months later after a routine blood test my results were 48 and classed as pre-diabetic, diabetic would be 50 and over. I was sent again for OGTT and the result was normal. I check my blood sugars regularly but my numbers have started to creep up and are typically 7 and above when checked at random. I had already decided to have them checked with medicheck when I do my next thyroid test. I am certain its not right but my Doctor thinks I’m nuts!
I’m really grateful for you’re help I’m really lost at the moment and need to get well I have people who need me to be firing on all thrusters!
Hi rosserk. Chicken 2/3 times a week is nothing! Sometimes I eat it almost every day, or some other protein source every meal. I was thinking maybe you were eating check every day, all day long. I'm with you on the veggies. I don't eat enough either.
I completely understand your frustration and feeling lost, and feeling that you're letting people down when you aren't feeling well and performing at your normal level. I have been there, too!
That is very strange about the pads. They always are hypoallergenic. That doesn't mean there isn't something in them you won't react to. I've had a reaction to a certain latex band aid (not sure what they call them where you are. they're those little adhesive bandages you put on your finger or a small cut.), but I don't normally react to latex gloves and I wear them all the time. The reaction I had was not a burn but more of a rash (and I don't get rashes). I'd be curious to see the photos of your burns when you post them.
Shame on your doctor. Diabetes is nothing to ignore, and he should know that! Good on you for knowing he was wrong and then retesting. You are certainly right! Your doctor is the one that is nuts! He is ignoring that you are prediabetic. Just think how things would turn out if you believed him, ignored things as he is, and then you'd probably become full diabetic. I am retesting my diabetes test in two months. Because I've changed my diet and gone back to lower carbs (how I've eaten my entire life, but I added a few things to my diet over the winter, like eating rice regularly) than I'd been eating at the time that I tested prediabetic, I am hoping that my test is again normal. I had gained 4 lbs (I think .28 stone?) after eating the rice for a few months and then at the time of the diabetes test. In the last month I've gone back to my low carb diet and lost 7 lbs (.5 stone?) without trying. This is a little strange for me because my weight had been stable for many years and I could never even lose a pound if I wanted to. Now my weight is 125-126, which I have not been for 20 years. (I am petite and muscular, but not skinny). I'm actually a little concerned and hope it doesn't mean anything and is just incidental.
I still can't get over that your doctor thinks your ferritin at 216 is "only slightly out of range and is nothing to worry about". "Slightly" out of range would be 155 on a range of 13-150, not 216. This is actually really disturbing that she's ignoring this and is not at least running the rest of an iron panel to make sure you are really ok.
When you do your Medicheck labs, will you also be running an iron panel, or will your doctor do that? I think looking into your full iron status is important, just to make sure that all of your other levels are not toxic. Ferritin measures a blood protein that stores iron. It should not be so high on it's own, and it's very possible that if your body is storing large amounts of iron as your ferritin is indicating, your other iron components could also be too high. Excess iron damages organs and tissues.
I was told high ferritin was caused by any sort of inflammation, and hypothyroid sufferers are often diagnosed with diabetes when the symptoms are in fact thyroid related🤔
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Sometimes I eat it almost every day, or some other protein source every meal. I was thinking maybe you were eating check every day, all day long. 
Blood results and thyroxine dose query
Latest results. Not sure what to do…
Confusing Thyroid blood tests
