Downhill again so soon?

[KymS]

Hi all,

Diagnosed hypothyroidism in may. Put on 50mcg levo. Retested in July (also tested for antibodies which are positive) my tsh had come down but that was all GP tested not T4 or T3 like my first lot of bloods.

Anyhow I was starting to feel better so felt the levo was helping.

Now I feel awful again already! Tiredness in full swing, sleeping in the day, cannot keep myself awake, not ideal with 4 kids and a job! Swelling in my hands, carpal tunnel, feeling cold all the symptoms I had before but also this awful nausea all day long.

I've spoken to the GP, I said this last 2 weeks I've felt worse. She said to retest again in another 2 weeks as it can take 4 weeks for your blood work to change if there's been a change in the thyroid? Anyone know about this?

Also my last retest I didn't miss a dose or do a morning fasting test like I've read on here which I will do next time.

I am new to all this so I had assumed I'd just be having my annual bloods and be feeling a bit better at least! I have started to go gluten free, as of Monday just gone,to see if this makes any difference.

My b12 and vit d are on the low side but in range. I have been supplementing these.

Thanks

K

[Hidden]

Have you had any dosage increase at all yet, or are you still on 50 mcg??

[greygoose]

This is a bit vague. July is more than two weeks ago. When was your dose increased? What are you taking now? Four weeks is too soon to test.

The protocol is : start on 50 mcg, retest in six weeks, increase by 25 mcg. Repeat process until all symptoms gone. But, very few doctors respect that protocol - doubt if they even know about it.

It is perfectly normal to feel well after a dose increase, and then feel the symptoms creep back in again. All it means is, that you're going to need an increase in dose.

[KymS in reply to greygoose]

Sorry to be vague, have replied below

[greygoose in reply to KymS]

As a general rule, give as much information as possible : dates, doses, results and ranges are essential to make sense of things.

Your doctor should have increased your dose in July, because your TSH was still too high, even without results for the FT4 and FT3. However, once the TSH goes below one, it becomes irrelevant, and you really do need the Frees tested. I think your doctor is probably going to need some prompting, there! She doesn't seem very clued up.

[KymS in reply to greygoose]

I will call and make sure she's ordered both the frees.

Any idea why she's making me wait another 2 weeks to test? She said its best to test around 4 weeks after symptoms have flared up again.

Is that something or is she making it up!? 😂

[greygoose in reply to KymS]

I think she's making that up! I've never heard of that before. Tests should be done six weeks after the initial dose, or any change in dose. She's probably just trying to save money for the practice by not retesting too soon, or something.

[silverfox7]

The six weeks is important as it takes that amount of time to get a new dose and then a change of dose fully into your body. So at the moment you may not even be feeling any benefit yet. Also when things do start to improve then it's temping to do those jobs that you haven't had the energy to do. Be kind to yourself I till you are nearer to the level that's right for you as extra exercise too soon can deplete the important T3.

When you think you are feeling well gain and still doing TSH results only then post your progress etc and we will give further advice it it looks necessary then.

I should have said welcome to the forum! Thyroid Uk run it and if you look on their site you will find lots of info of how to manage your condition. Anything you don't u derstand then shout out and you will get help. Remember we have all been their and have welcomed advice.

Hope you soon feel better but remember things in the Thyroid world take time so patience is needed as you can't successfully speed it up but you have already taken the first important step by being diagnosed.

Always get a printout of your results and put your currect dose on them so you can see your progress and ask for help by post them and the ranges and we can comment. The ranges are very important as they differ from lab to lab so without them we would just be guessing.

[KymS]

Sorry, didn't realise I was a bit vague.

Diagnosed 22 May- put on 50mcg

Retested 6 weeks later 5th July-TSH normal no futher action. Was feeling better too.

Have been going down hill again in the last 2 weeks, spoke to dr who said wait a further 2 weeks to have bloods done.

I have been on 50mcg since may, no dose change.

Thanks

[Marz in reply to KymS]

Do you have the results with ranges for the July test ? Also the results for B12 - Folate - Ferritin and Vit D ?

[KymS]

May 22nd results

TSH 5.83 (0.3-4.2)

Free T4 14.5 (9-19)

Free T3 4 (2.6-5.7)

50mcg levo

July 5th results

TSH 2.05 (0.3-4.2)

No T4/T3 taken

Antibodies 200 (<31)

[Marz in reply to KymS]

Most people feel better with a TSH around 1 or under. So a dose increase would have been appropriate. Without the FT4 and FT3 it is difficult to confirm that.

Your results in May were not too bad for FT4 and FT3 so am thinking it is the LOW Ferritin - B12 and VitD that are the cause of you feeling unwell. How are you treating the levels currently ?

As you have Hashimotos you may feel an improvement by going gluten free - many do. Lots of books and websites about living with Hashimotos - so have a google and see what appeals.

[KymS]

B12 353 (180-900)

Vit D 45 no ref range but indicated low

Ferritin 56.5 (10-200)

[Marz in reply to KymS]

How are you treating these levels ?

[KymS]

My ferritin level in Dec was 9, but came up with iron tablets and more iron in my diet.

I am taking 10,000iu vit d a day/ 100ug K2 & 5,000ug b12 a day sublingual

[Marz in reply to KymS]

Please click onto the Green Reply Button so the person receives an alert. Noticed this by chance 😊😊

You also need a B Complex ....

[KymS in reply to Marz]

Still getting used to this sorry! 😊

[Marz in reply to KymS]

😊😊

[SlowDragon Administrator]

Without testing FT4 and FT3 the TSH is pretty meaningless. TSH is probably still too high.

Low vitamin levels suggests poor gut function. Changing to gluten free diet may help.

amymyersmd.com/2017/02/3-im...

thyroidpharmacist.com/artic...

[KymS in reply to SlowDragon]

Thanks slow dragon, on day 4 of no gluten. Hoping this helps! Thought I'd struggle as I love bread but I just keep thinking of the benefits to my health

[SlowDragon Administrator in reply to KymS]

Watch out for hidden gluten in beer, sauces, marmite, etc