Hypo symptoms still strong : Hello again all, I... - Thyroid UK

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Hypo symptoms still strong

shond2015 profile image
18 Replies

Hello again all,

I am into my 4th week on 75 mg Levothyroxine and am so disappointed that apart from no longer suffering an excruciating tightening of the chest, I don't feel any different. I am still struggling to walk any distance without feeling I need to lie down...If I stand for more than 5 minutes, I have to go and lie down. I also now have a lovely rubber ring around my middle that is getting bigger! (6 months ago, my stomach was flat and even concave). If I eat anything I can't move afterwards... sitting in the bath has become impossible as I can't seem to bend or flex my body without huge discomfort.

I am terrified about having to do battle with my GP in two weeks time to either increase my levothyroxine or request a free T3 (I honestly don't know what this is actually! but just assuming I may need this based on all the posts I have read). My attention span is so poor at the moment that I cannot take much in.

My biggest problem however is trying to interpret all the figures/norms/ranges that are talked about... I am so confused. I wondered if anyone had a simple idiots guide...something like a table.. or maybe produce one so that I and others could better understand the hormone numbers better?

Thanks to all of you.

Shon

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shond2015
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18 Replies
gabkad profile image
gabkad

Shon, early days yet. It takes time for the medication to make a difference. Who knows how long you've been struggling with being hypothyroid. It takes time for the meds to build up and it takes time for your body to rebuild.

When you get your next bloods taken, please do not take the meds before the blood draw. Try to get the blood taken as early as possible in the morning and then afterwards take the medication. Please post your results here. You need to get your blood test results for your own records.

shond2015 profile image
shond2015 in reply togabkad

Thanks very much for taking the trouble to reply. Very much appreciated. Shon

Clutter profile image
Clutter

Shon, the 75mcg will only have started working a couple of weeks ago, it's good that you've had some improvement already. More will come.

Arrange your blood test early in the morning, and fast (water only) as TSH is highest that way and you're more likely to get a dose increase. Take your Levothyroxine dose after the blood draw.

Look back at the advice in your first thread about raising your stomach acid to improve digestion and try a gluten-free diet.

FT3 is a blood test. It probably won't be tested unless TSH is <0.03. The tests your GP should order are TSH and FT4, but some only order TSH.

Ranges can vary from lab to lab which is why members are asked to post results and ranges. Having the range enables one to determine whether the result is below range, over range, low-normal, high-normal etc. Ideally, TSH will be around 1.0 which is low-normal, FT4 in the mid to high-normal, and FT3, if tested, mid to high normal.

When you post your results and ranges ask for an explanation how to interpret them for yourself.

shond2015 profile image
shond2015 in reply toClutter

Thank you very much Clutter.

Hello shond,

Clutter has already given you excellent advice but I wanted to say remember it is normal for symptoms to lag behind good biochemistry. This means even with a good test result indicating you are taking the correct dose or meds and your hormones levels are becoming more balanced, you can still feel symptomatic for another 6-8 weeks all be it on a lesser scale...hopefully.

We are all different and depending on how long you remained undiagnosed before medication, will have a bearing on how quickly//positive you respond to thyroid hormone replacement.

You are on the right path now simply by being medicated and must believe that you will get better.

A good read is "Your Thyroid And How To Keep It Healthy" by Dr Barry Durrant Peatfield.

Flower

Tulips51 profile image
Tulips51 in reply to

I am reading this book was recommended on here, very interesting👍

shond2015 profile image
shond2015 in reply to

You are all marvellous. Thank you for taking the time to read my post and then answer it. Shon

Treepie profile image
Treepie

As my GP said it will probably take as long as it took to get ill to get right . I think that was over gloomy when with hindsight I think about what I now realise was a symptom of being , at least two years before ,and not just getting old or drinking too much.Nevertheless it took over 12,months to feel nearly well.

You will get there but need to be patient as being anxious about it will not help your health.

shaws profile image
shawsAdministrator

Forget about figures etc. just get copies and post them here for comments/advice. Labs throughout the UK use different machines so they have different ranges we don't need to learn them but you will absorb info slowly as you get better.

Re T3 and FT3 you will see explanations on the link below:-

thyroiduk.org.uk/tuk/testin...

richie296 profile image
richie296

You will probably have to take tablets for 2 months before dosage change. My doc told me 2 months for tablets to kick in. Another doc said 3 months. Now they say 5 even up to 6 months. They say it differs on everyone. This is not a scare monger this is my dilema. If you try to tell your doc at this early stage you will be wittled down with science.

greygoose profile image
greygoose in reply torichie296

They're having you on. 6 weeks maximum. :)

Rachel_81 profile image
Rachel_81

Hi!

I was feeling like ... well, terrible in March.

My endo thinks that I am resistant to thyroid hormones, as I had all the classical symtoms but TSH was 2.5, T3 and T4 on lower part of the range.

Some of my symptoms, anemia, lack of breath (tight chest), brain fog, impaired memory, leg, foot and arm pain, weak muscles, extreme fatigue despite sleeping 12 or more hours, headaches, very severe constipation, no bowl sounds, indigestion, dry itchy skin, insomnia and so on.

Besides anemia, my blood tests showed Vit D deficiency.

She tried upping my vitamin D levels (35000 IU 2 x month) and the pain in my legs and feet improved, also my brain fog, everything else was the same, my level went from 11 to 50.

So she started me on Levothyroxine (T4).

Started on 25 and I am now on 112mcg, I feel much better, but I only started feeling better 5 weeks into the 112mcg, it took 5 months to get up to 112mcg.

I still get very tired, but not 24/7, my anemia which was chronic (17 years anemic) has now resolved! I get headaches and my constipation is still bad but now I go once a week (I was able to go 2 weeks before or more).

I have an appointment in a few weeks and my endo is going to try me on a combination of T3/T4 to see if this helps me even more.

I have no symptoms of hyper, but you should always be on the lookout for that. I personally feel more calm and sleep better with the Levothyroxine.

Now, I know that thyroid resistance isnt the same as Hypo, but I hope this helps. It takes time to feel better, and definitely get your Vit D levels checked.

I was also prescribed Magnesium (maybe helps me sleep).

Good Luck!!!

galathea profile image
galathea

The constipation may well be helped if you try some capsules of psyillium husks from Holland and Barret. ( Other brands probably availble but i have never looked.). Hypo stops you maKing the right amount of stomach acid so stuff doesnt get absorbed and it massively slows down the digestive tract....

Been there, got the various t shirts. Fortunatly just a distant memory these days!

xx. G

Rachel_81 profile image
Rachel_81 in reply togalathea

Thanks Galathea! :)

tamhen profile image
tamhen

Hi, I had symptoms very similar to yours but was also deficient in Vit D and very anaemic. I started on 50mcs of Levothyroxine but also was prescribed Vit D and Iron tablets at the same time. I noticed improvement after about 6 weeks of taking all of the above. If you haven't already get checked for anaemia, Vit D and B12 as deficiencies in any of those could be responsible for some of your symptoms.

Good luck.

Rachel_81 profile image
Rachel_81

Yes Tamhen! There can be many deficiencies besides thyroid, the effect that hypo has on digestion must also make vitamin and mineral absorption harder.

From what I read vit D deficiency is very common, my sisters and mom got tested and are all vit D deficient also.

After reading some advice on this website I am now adding B12 (is in lower range).

It's a shame most docs dont routinely check these levels when patients complain of fatigue, I am sure that getting all of them in the higher range would be beneficial.

Flower3 profile image
Flower3

Everyone is different but my experience is that is takes a lot of time (and energy and frustration). When I started levo I also expected to notice something, maybe after a week, maybe after a month. But nothing happened (I did felt better for 2-3 weeks but that was temporary). Just like everybody says here, it will not go that fast. You don't know how long your body was hypo, it affects so much in our body, you need to give it time. Meanwhile take good care of your body; vitamins, minerals, food, exercise, rest.

With me my levels kept going up and down and was feeling miserable. After almost 1 year on levo on different doses they found out I have Hashimotos Disease which explains all. Did you get your antibodies tested (anti-TPO and anti-TG)?

The best tip I have is to get yourself educated. Read and learn about the thyroid. Every lab has different ranges, always ask for a copy of your results. I keep a sort of diary, after every blood test I write down what my results were, which dose I was on and how I feel. This way you can get a good view on which dose suits you most and which levels makes you feel good. You want the TSH to be low (around 1) and FT4 in the upper range, same for FT3 but they often don't test that.

Keep strong, you will get there eventually!! The book I can recommend is of Isabella Wentz, that book contains all the information if you ask me, it explains it all.

shond2015 profile image
shond2015

Flower 3

Thank you for such a practical and useful response.

Your idea of a diary sounds good - think I will do that....

Shon

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