Help with blood results, still don't feel better. - Thyroid UK

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Help with blood results, still don't feel better.

kopey profile image
24 Replies

Just over two weeks ago, I was diagnosed with hypothyroidism. My TSH was 59.4 (Optimal = 0.40-3.50) and my Free T4 was 7.1 (Optimal = 9.0-19.0)

I've just had another blood test after being on 75mg of the Australian equivalent to synthroid/levothyroxine for two weeks. And my most recent results are: TSH = 6.5 and Free T4 = 15.0.

I'm really happy with those results because it's a massive improvement in two weeks on paper, but unfortunately still don't feel well. My doctor said not to worry and that I should feel better in a few weeks, is this true? Once the TSH drops to an appropriate number will all the symptoms suddenly clear up or at least improve? And if they don't I'm thinking of switching to Armour. Although apparently my T3 levels are good.

Am doing everything else (supplementing with vitamins and gluten free), so just wanted some advice based on these results. Cheers.

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kopey
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24 Replies
Redditch profile image
Redditch

In my experience, a drop from 59 to 6 in two weeks is not medication based.

You may have been having a thyroid storm that has subsided.

We're you sick with anything else in the few months before your diagnosis?

Did they test your TPO antibodies?

What are your symptoms?

You are clearly not well, but straightforward hypothyroidism, this is not.

Good luck and keep us posted.

gabkad profile image
gabkad in reply to Redditch

'Thyroid storm' applies to hyper thyroid. She's hypo.

Thyroid storm is a life-threatening health condition that is associated with untreated or undertreated hyperthyroidism. During thyroid storm, an individual's heart rate, blood pressure, and body temperature can soar to dangerously high levels.Aug 3, 2015

Thyroid Storm: Causes, Symptoms & Diagnosis - Healthline

Redditch profile image
Redditch in reply to gabkad

Er...my consultant endo calls my crazy fluctuations, storms

I have Hashimotos and sometimes my TSH shoots up to 6 or drops to 0.01 in a few days, I know when it's happening because I feel dreadful but it calms down, and I'm fine again.

I don't think 59 to 6 in two weeks is anything to do with 75mcg of levo. I think she's had a massive event that is calming down.

gabkad profile image
gabkad in reply to Redditch

Her TSH was high but her fT4 was below range. So that's not a storm. For whatever reason her thyroid was not functioning at all adequately.

Please re-read the excerpt: thyroid storm is a life threatening condition.

Berlidders profile image
Berlidders

Sadly what our bloods say are very different to what's happening in your cells.

I never got better on Levo even though all my blood said i was perfect. My body ached all the time & I was foggy with depression. My doctor then diagnosed me with fibromyalgia & depression.

Then I found T3 only treatment. I read Paul Robinsons book. Started T3 treatment and within 3 months my whole life changed. A light went on. My body healed & my depression lifted.

My endo has been desperate to get me off T3 only treatment but I persisted & im not giving up being well again. Finally he's given me a prescription in recent weeks because he can't deny the results.

Look up Paul Robinsons blog if you don't get better on Levo. Xx

Eddie83 profile image
Eddie83 in reply to Berlidders

Does your doc want to push you from T3-only to T3+T4? Or is he trying to push you back to T4-only?

Berlidders profile image
Berlidders in reply to Eddie83

Trying to get to take t4/t3 combo. I'm sticking with T3 treatment. I bought my entire years worth of T3 medication from a pharmacy in turkey for less than £30 this year. I get about a 3rd of what I need from the NHS.

Eddie83 profile image
Eddie83 in reply to Berlidders

Most doctors don't understand that some very sick people have permanently damaged T4->T3 conversion, which becomes worse with age. The woman who used to run the old RT3_T3 mailing list, had tried repeatedly to go back on T4 and every attempt resulted in excess rT3 generation and feeling like hell. So she has stayed on T3-only. I never asked her if she was taking doses throughout the day, or using the John Lowe nuclear option (take all T3 once per day).

chrisknott profile image
chrisknott in reply to Berlidders

Dear Berlidders

I too am on T4 and T3 combo. I have read Paul Robinson' s book and would love to try T3 only. Are you able to give me details of you supplier please. Thank you

Berlidders profile image
Berlidders in reply to chrisknott

Hi Chris

I would suggest joining the Facebook group 'recovering with t3', reading the stickies and threads regarding suppliers. It varies depending on where you live and what your needs are.

Plus you get direct support from Paul himself and other incredibly knowledgable admins

Cheers

Berlidders

chrisknott profile image
chrisknott in reply to Berlidders

Thank you so much Berlidders- I will do that.

Best wishes

Chris

Treepie profile image
Treepie

Not sure that I agree with Redditch.I went from 102 to 3.3 in four weeks and to 2.3 eight weeks later.1.9 eight weeks after that,then 1.1, 0.33 and eight months on 0.170.Most of the time on 125mcg.

As to symptoms ,some went quick but I did not feel well for nearly 12 months and I think adding vitamins helped .Still have cold feet alot of the time.It is not a quick fix.

mistydog profile image
mistydog

Levothyroxine might work for you but you have to give it a chance. Get your folate, ferritin, B12 and vitD results and post them with ranges. Also post your free T3 results so we can see if they really are good.

You didn't getill overnight and it will take a while to get you back to you.

And Armour isn't necessarily the best NDT. l

Karen1963 profile image
Karen1963

It will take awhile to feel better. I hope. In 6 weeks the doc will reassess.. Hang on... What are the ranges in Australia. Did they test for anti-tpo to see if you have autoimmune thyroid? What are your T3 levels? Did they test for B12, iron, vit D?

You must ask for these....

Many Hashi people must go gluten, dairy free- autoimmune diet. Paleo...

Supplement with selenium, magnesium, vit B, D, maybe iron there are many here with sound advice...

gabkad profile image
gabkad

kopey, usually testing is done 4 to 6 weeks after the initial levothyroxine dose is prescribed. At 2 weeks your blood levels of the medication are just starting to increase.

Do you have another appointment for blood testing?

TSH should be about 1.0 when you are at the right dose.

greygoose profile image
greygoose

Kopey, you don't give the range for the FT4. We always need the ranges. :)

You say your FT3 is 'good'. So, what are the numbers? 'Good' is an opinion, not a diagnosis.

I don't think your doctor knows an awful lot about thyroid, does he, or he wouldn't have tested at two weeks. It's much too soon.

You say you're gluten free, but have you had your antibodies tested? If you're not Hashi's, then the gluten free possibly won't do anything for you.

You say you're taking vitamins. Which vitamins? Did you get tested for any nutrients first? It's always advisable to test first.

All details are important, otherwise any 'advice' will just be guessing. :)

puncturedbicycle profile image
puncturedbicycle

My first thought is why be tested after two weeks when it will take 6-8 to stabliise? And my second thought is that levo isn't like a painkiller where you take it and expect to feel better, it's a replacement hormone which will begin to restore balance to a body which has been deprived of normal levels. Your tsh was very high when tested, so you were likely to be very deprived.

It's a bit like being forcibly starved for a long time and then going back to a normal diet. Some things will feel better quickly - you'll satisfy your appetite, maybe your stomach will stop hurting - but other things like vitamin deficiencies, body weight and trauma etc will take longer to correct.

Also, the nature of levo is that it builds up in your system, so there's a slower-acting process at work while the levels increase and your body begins to use it.

Try not to worry about whether or not it will work for you. Just see how you are after two months, whether or not you need an increase etc, and once your levels are good for a period of time you'll have a better idea of whether you want to try something else.

Bluemaxx profile image
Bluemaxx

Hi - It took me a couple of months to start feeling better and now, after five months I am feeling fantastic but as other members said above, it's different for everyone and other factors come into play. For example I had another huge improvement just by supplementing B12, folate & Vitamin D. I started on levothyroxine only and now add a bit of T3. It all depends on your blood results.

5858 profile image
5858

I also had a high TSH like 95, It does take time. Honestly it does depend on your personal situation. I started feeling better but it took I think over a year to straighten out. I take synthroid......but the dose had to be changed at a pace like every 6 weeks....... I also think it depends on how long your body was untreated. I think give it a chance. I don't have the knowledge as others do on this site. Its just my personal experience. I wish you all the best. Susita

Eddie83 profile image
Eddie83

It takes a while. You have to climb the sawtooth: taking exogenous hormone lowers your TSH, which drops you endogenous hormone level, which requires another increase. Given the one-week half-life of T4, you do have to wait about 5 weeks between tests.

However ... what do you mean that your T3 levels are "apparently" good? Did the doc do a test? Don't let them blindside you about this. They can't know if your T4->T3 conversion is working well, unless they run a FT3. Remember, if your doc isn't hypothyroid, he/she doesn't know what it's like to be kept in limbo for months. I would also be skeptical of the doc, if doc doesn't know that the full TSH/FT3/FT4/rT3/TPOAb/TGAb panel should be run on every hypothyroid patient.

sprout28 profile image
sprout28

I know that stress can cause your TSH levels to go up at least thats what my sister says. Have you been stressed out plus insulin can make you TSH go up are you diabetic

Are you on any other meds that can affect the TSH level

I know that my TSH level goes up when i am stressed out or i have to add insulin as a sliding scale to help with my diabetes

Hang in there

monsie profile image
monsie

Hi

I think that once we start taking t3 and t4 hormonal supplementation the TSH results are not reliable any more.

I do not see your t3 results... the more important thing is to have t3 and t4 within the range and forget about TSH results. It takes some days to feel better.

If you do not feel better is because you are not taking t3 t4 (Nature-Throid or Thiroyd or Armour). I do not believe in synthroid/levothyroxine because they are t4 only and if our body does not convert t4 to t3, which happens to many of us, then synthroid/levothyroxine I counterproductive. It happened to me in the past with a Dr in Brisbane.

In Australia there is no t3/t4 medication. You can buy it in USA without prescription. Armour in USA is very expensive because you can get it there without the prescription, that's why.

I buy now Thiroyd tablets in Thailand which are cheaper that Armour in USA. Also people seem to complain in other forums that Armour is not what it used to be...

I hope I have not confused you. Good health!

monsie

monsie profile image
monsie

I am also 100% gluten free. It may take 2 years to heal the gut... but it is our only cure.

monsie

kopey profile image
kopey

Thank you everyone for your responses. I will try to respond to everyone’s different comments in this post.

I don’t think dropping from 59 to 6 in two weeks is abnormal, and there hasn’t been any thyroid storm or big illness or anything like that. I think it’s quite normal to have big fluctuations, especially when I’ve just started the medication.

Thank you to those that recommended T3, I will definitely keep it in mind and try T3 if I do not see improvement in a few months on T4 only - although hopefully I am a good converter as my T3 levels are good and my mum who also has hypothyroid doesn’t have problems converting.

I am young (21 years old), and was diagnosed with Coeliac three years ago, so after strictly avoiding gluten, following a paleo diet and supplementing with vitamins, my gut is (hopefully) repaired and my symptoms are not too severe, so I am hoping hypothyroid is the only remanding thing I suffer from.

For those asking, all my vitamins and minerals including B vitamins, ferratin, vitamin D, selenium, zinc, magnesium etc. are regularly tested and I am not deficient in anything. I try to eat organic as much as possible and I think all these factors are why my symptoms are not too bad. The main things I suffer from are coldness, dry skin, low libido and bad acne/pimples, fatigue and low energy. It’s mainly the energy that concerns me so I am hoping fixing my thyroid with this medication will be the final step in my health recovery.

For those asking, the reason I had a blood test done after 2 weeks is because I am about to go overseas so my doctor wanted to do a check right before I left. It is unfortunate that we only had 2 weeks to work with but that is why I had a blood test so soon. My doctor does know an awful lot about thyroid, she is a very good integrative doctor in Sydney and if it weren’t for her, I wouldn’t already have a head start in terms of healing because she has treated me through dietary changes, vitamin and mineral supplementation etc. for the past 3 years. I used to be a lot worse three years ago!

I had my antibodies tested and am indeed Hashi. However because my diet has been generally very good especially since my Coeliac diagnosis, I think it is hereditary, as my mother has it as well.

Good news is I am seeing improvements in my acne, there only appear to be marks now, no new zits. Just hoping my energy levels improve.

I really hope that hypothyroidism is the only thing I’m left with now, and that it will get better soon. As apparently hypothyroid and coeliac often go together.

I think I will give levo a few more months, and if I still feel the same I will consider a T3 or natural thyroid option.

My doctor tested everything including Free T3 and thyroid antibodies. My results have not officially arrived through the post, but my doctor very kindly emailed me with the TSH and T4 result, and said the T3 was good and antibodies suggest it is indeed Hashi’s. I trust her because she is a fabulous doctor, but as soon as I get the official T3 result I will post.

I haven’t been stressed and am not diabetic, nor am I on any other meds.

I am hoping after 3 years on a gluten free diet and no longer having any gut symptoms means that my gut is healed.

I always thought that a damaged gut was the only reason for acne but now I am starting to hope that hormones and my hypothyroid issues have been why I still have horrible acne. Am really happy to see it improving and hope it continues!

Main thing I want to see improve is my energy because I don’t have the drive or get up and go to do anything during the day or see anyone. Am very lethargic so hope that changes! It has only been 2 and a half weeks on levo so I will hang in there! Thanks again and will keep you updated.

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