Just having a bad day: April hasn't been a good... - Thyroid UK

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Just having a bad day

Obsdian profile image
10 Replies

April hasn't been a good month for me and synotoms.

Been on only 50mcg levo since end of September. Only JUST this week got an increase to 75 thanks to the private bloods I did due to recommendations on this site.

First I caught a sinus cold at the start of Easter break, which triggered a flare up finishing off my Easter break. Returned to work for four days before having another flare up. Then went in to work this Wednesday gone just to find out it was too soon and have been off again yesterday and today.

I'm only two pills in to taking 75 levo. Time can't pass quickly enough.

Had a conversation with a doctor this week, the one that increased my levo, and also asked about my vitamin levels and was told the nhs would never treat them at these levels. Today was told I needed to make an appointment to discuss recent blood tests so now I'm stressing about that!

The only thing in my blood panel that was out of range was hemoglobin and mch. My guess is that with the lower range Ferritin levels this probably indicates some type of anemia related issue. Googled a bit and found something that fits these results that listed hypothyroidism as a possible cause.

Anyhow, worrying about that now while I already feel miserable. The GP appointment isn't until May 14th.

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Obsdian
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Purplefiona profile image
Purplefiona

I can sympathise. I feel your pain and can recommend Feroglobin which is a sort of orange flavoured gunge which seems to do wonders for my fatigue 😴

It is so sad that we have to go private isn’t it. Can you tell me where you went as I might need to do that too

F

Obsdian profile image
Obsdian in reply to Purplefiona

It was just the blood test done privately via Medichecks.

FallingInReverse profile image
FallingInReverse

Hi!

You are indeed doing the right thing with your Levo. And at the 50-75 level it is tough for everyone. It takes a couple months of each dose because T4 is part of a long chain reaction that takes time to build up and settle at a stable level. So hang in there, it gets better. You just have to be patient, which is really hard when you feel so bad.

You received excellent advice of your Ts AND your vitamins and minerals in your recent post:

healthunlocked.com/thyroidu...

Getting the increase to 75 is exactly the right step you needed to take. And yes, you will find patience you never knew you had while you wait out the next 6 weeks. It won’t be terrific every day : ) in all likelihood you just need to hold the line for the next 6 weeks.

Also, I see from your last post that your vitamins weren’t horrible : ) But that you got lots of good advice to bring them up a little further.

I think you had a remaining question on B12. There were great links in that post, but not sure if you saw this one with a comparison of all the B options:

healthunlocked.com/thyroidu...

In my case (for my daughter) I chose to do the BetterYou B12 1200 ius a day for a couple weeks then added the Thorne Basic B complex starting at twice a week. But the above link has such great info on the kinds of B to look for, the ones to avoid, and how much others take. Have a look.

Remember also that it is recommended to only change one thing at a time (ie, 50-75 Levo is a solid change). Reason we recommend is that whether you feel better or worse, you won’t know WHY if you change more than one thing at a time. Also, increased Levo can impact how your absorb other vitamins, so it’s good to isolate that impact.

Did you also have a question about raising your ferritin? You are correct that being hypo will interfere with your ability to absorb iron.

Before supplementing iron, you need a full iron panel. Iron and Ferritin are not necessarily correlated, and excess iron over time is toxic and causes irreversible organ damage.

An iron panel generally consists of:

-Iron

-Total iron-binding capacity (TIBC)

-Transferrin saturation

-Ferritin (note - also in thyroid panel)

-High Sensitivity CRP (CRP-hs)

Come back if you have those results and you can get good advice there.

Don’t stress about May 14th … just stay strong through your new Levo dose, and come back and start a new post right before so we can help you mentally prepare !!!! It will be too soon for a Levo dose change. Others in the UK might have better advice on how to handle!

You’re doing the right thing, hang in there!

Obsdian profile image
Obsdian in reply to FallingInReverse

My appointment to see how Levo is doing is not until July 4th. Doctor wouldn't do the usual 6 weeks. I thought 10 weeks is better than no change so went with it.

Will go look at my bloods from April 9th and see how many iton related ones were there.

Obsdian profile image
Obsdian in reply to FallingInReverse

Only these two were done.

Ferritin 60 (30-204)

CRP 1 (0-5)

Obsdian profile image
Obsdian

I have bought better supplements as well as a very basic iron but am too apprehensive to try the iron yet. I want to ask the doctor if it's ok on May 14th.

Obsdian profile image
Obsdian

Further question

Does my flare up feel this bad because my tsh shot up from 1.88 to 4.12 in a month... Or is this from the sinus cold/virus I had at the start of the month? I guess also maybe we can't figure that out.

This is my worst flare up so far. I had only one bad flare up before this, back in December, which was directly linked to a different GP changing my progesterone dosage and setting it off. Other than that, the rest of my flare ups have been small usually two day things.

FallingInReverse profile image
FallingInReverse

Hi,

Taking this one thing at a time.

1) Thyroid hormone replacement: you are 2 pills (I presume this is 2 days) into your Levo increase. Next bloods on July 4th, about 10 weeks on 75 mcg daily. This is a fine plan. Stick to it. If you get really impatient for any reason between now and then, come back to the forum and let us know. Just like right now, you will have good and bad days, but in almost all cases you just need to wait it out without changing anything.

2) Other supplements: which ones did you get, how much/what dosing have you decided on and when do you plan to start each of them?

3) Iron: As I noted above, it is not recommended that you supplement with iron without a full iron panel. Your Iron level for example (a measure you don’t have) is one critical test you need to know if you have excess iron in your blood, and it’s a number you need to test regularly (every 6-12 weeks depending) whenever you supplement. To be honest, your ferritin needs to be increased, but consider there are many people here (myself included) whose ferritin is single digits or only in the teens/twenties, you have some room to wait and sequence this change after your Levo change. Also - not sure if you’ve also changed other vitamins recently. It’s best practice to slow down and be methodical about how much you change at once.

4) Flare ups: I think you are talking about bad days when you say flare ups? I don’t know your whole history, but will say that with an underactive thyroid, it’s inherently a long volatile journey of ups and downs. Everything in your body is connected especially when it comes to these hormones. It’s just the nature of our complex bodies - and yes, viruses/colds, stress, what we eat, how much sleep we get, if we are very active or exercise… all sorts of things can trigger all sorts of symptoms for unpredictable amounts of time .

Then there are things completely in your control. For example - you just mentioned changing your progesterone dose. This goes back to the principle of only changing one thing at a time or else you won’t know what’s causing anything. You shouldn’t be changing more than one thing every 6-8 weeks with Thyroid hormones. HRT is a whole other really nuanced treatment to work in really slowly. When you change vitamins we recommend waiting a couple weeks before introducing new ones or changing doses. This is the only way to know what action to take if you end up feeling worse.

Obsdian profile image
Obsdian in reply to FallingInReverse

I could be adding too much at once but nothing was added or changed around the time my flare up started.

Have added some more basic vitamins:

Vit D 25ug

Folic acid 400ug

Also added a better quality B12 (had already been taking a lower b12 for months) Cytoplan b12 from the recommendation.

FallingInReverse profile image
FallingInReverse

I’ll just say that being in 50 mcgs for any extended amount of time, and then titrating, is not a straight line for symptoms. I was on 50 for 9 months (too long!) and then took another 9 months to get to 75 with some T3 added. After 18 months I finally feel like I’m at the starting line.

You could have a virus and its effects will ripple for weeks or months. You could excercise too hard and take days or weeks to recover. A drink with dinner can knock some of us on our butt for a couple days. Not to mention any HRT stuff going on. And adding vitamins. So much going on : )

So the principle of only changing one thing at a time isn’t necessarily because the change you’re making will be bad or that you won’t ultimately end up on the dose you choose. It’s because when you feel better or worse you won’t know why, and therefore won’t know clearly what to do next.

There are some who will bend this rule when you are at these starting doses of Levo. But still be aware it will muddy your conclusions for the time being.

You have some input in your previous posts about vitamins. There was some advice around not taking multivitamins, and about some of the others not being a high enough dose to make a difference. Titrating and optimizing your vitamins is also a tortoise vs the hare exercise, and always good to be very specific based on your test result and then deciding on exactly how much you’ll need to break through.

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